User-led Organisations
Support Pack
A toolkit to help Voluntary and Community
Sector organisations wishing to develop as
User-led Organisations
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Contents
foreword ............................................................................................................ 4
KEITH HINKLEY (EAST SUSSEX COUNTY COUNCIL) AND NICK TAPP (ESDA) ........... 4
KRISTINA VEASEY, MENTEE AS PART OF THE EAST SUSSEX USER-LED
ORGANISATIONS DEMONSTRATOR SITE PROJECT ................................................ 5
Section 1: Introduction To The Support Pack .................................................... 7
ACKNOWLEDGEMENTS ...................................................................................... 7
OVERVIEW AND PURPOSE OF THE SUPPORT PACK ............................................. 8
WHY SHOULD MY ORGANISATION BECOME A USER-LED ORGANISATION? ............. 9
CASE STUDY 1 ............................................................................................... 10
Section 2: Explaining User-Led Organisations ................................................ 12
USER-LED ORGANISATIONS: WHAT ARE THEY AND WHY ARE THEY IMPORTANT? 12
ESSENTIAL FEATURES OF A USER-LED ORGANISATION: THE DEPARTMENT OF
HEALTH’S ‘DESIGN CRITERIA’ .......................................................................... 13
CASE STUDY 2 ............................................................................................... 21
Section 3: Defining User-Led Organisations .................................................... 23
MEETING THE DESIGN CRITERIA: GROUPING THE DESIGN CRITERIA INTO RELATED
TOPIC AREAS................................................................................................. 23
MEETING THE DESIGN CRITERIA 1: THE SOCIAL MODEL ..................................... 24
MEETING THE DESIGN CRITERIA 2: EQUALITY, DIVERSITY AND RIGHTS ............... 30
MEETING THE DESIGN CRITERIA 3: THE ORGANISATION’S CONSTITUENCY ........... 35
MEETING THE DESIGN CRITERIA 4: CARERS, NETWORKS, PARTNERSHIPS ........... 41
MEETING THE DESIGN CRITERIA 5: A SUSTAINABLE ORGANISATION .................... 45
MEETING THE DESIGN CRITERIA 6: IMPROVING COMMISSIONING ......................... 52
Section 4: Training .......................................................................................... 57
DISABILITY EQUALITY TRAINING FOR USER-LED ORGANISATIONS........................ 57
Section 5: Mentoring ....................................................................................... 59
MENTORING FOR USER-LED ORGANISATIONS ................................................... 59
PEER SUPPORT ............................................................................................. 63
Section 6: Challenges For Developing User-Led Organisations ...................... 65
BECOMING A USER-LED ORGANISATION: COMMON HURDLES FACED WITH SOME
POSSIBLE SOLUTIONS TO OVERCOME THEM ..................................................... 65
Appendix 1: Background Supporting Information............................................. 71
USER-LED ORGANISATIONS – KEY DEFINITIONS ................................................ 71
USER-LED ORGANISATIONS: GOVERNANCE STRUCTURES .................................. 76
PROMOTING INDEPENDENT LIVING ................................................................... 78
TRADITIONAL OR INDIVIDUAL MODEL OF DISABILITY: A SUMMARY ...................... 81
SOCIAL MODEL OF DISABILITY: A SUMMARY ..................................................... 85
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TALKING THE SOCIAL MODEL: SOME TIPS ON INCLUSIVE LANGUAGE AND
TERMINOLOGY ............................................................................................... 88
DISABILITY “ETIQUETTE”: WORKING MORE EFFECTIVELY WITH DISABLED PEOPLE 96
REMOVING INFORMATION BARRIERS: PROVIDING ACCESSIBLE INFORMATION ........ 99
ORGANISING INCLUSIVE EVENTS: GUIDANCE NOTES ........................................ 103
Appendix 2: Useful Tools .............................................................................. 112
BECOMING A USER-LED ORGANISATION: BASELINE ASSESSMENT QUESTIONNAIRE
FOR ORGANISATIONS WORKING WITH DISABLED PEOPLE ................................ 112
USER-LED ORGANISATIONS: A BRIEFING FOR BOARDS OF TRUSTEES............... 120
TEMPLATE RESOLUTION FOR BOARDS OF ORGANISATIONS .............................. 126
AIMING TO BECOME USER-LED ..................................................................... 126
EQUALITY IMPACT ASSESSMENTS .................................................................. 127
THE ROLE OF ULO CHAMPIONS ..................................................................... 129
EXAMPLE BOOKING AND ACCESS NEEDS FORMS ............................................ 131
EXAMPLE TRAINING EXERCISES ..................................................................... 142
USER-LED ORGANISATIONS .......................................................................... 142
DISABILITY EQUALITY TRAINING FOR MANAGEMENT BOARD, STAFF AND SERVICE
USERS ........................................................................................................ 142
MEETING THE DESIGN CRITERIA: QUICK REFERENCE ACTION POINTS ............... 153
TEMPLATE ACTION PLAN FOR DEVELOPING USER-LED ORGANISATIONS ............ 170
Appendix 3: Useful Resources ...................................................................... 172
SOURCES OF SUPPORT FOR DEVELOPING USER-LED ORGANISATIONS ............. 172
USEFUL RESOURCES .................................................................................... 182
References .................................................................................................... 184
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Foreword
Keith Hinkley (East Sussex County Council) and Nick Tapp
(ESDA)
Welcome to the East Sussex User Led Organisations (ULO) Support Pack.
This Support Pack is designed to help organisations to put service users and
carers at the centre of what they do.
Produced by East Sussex Disability Association and East Sussex Adult Social
Care with a team of service user and carer experts, and funded by the
Department of Health, the Support Pack contains useful tips and advice on how
to make your organisation user led.
All services should aim to make a positive difference to the lives of the people
using them - this is even more important when it comes to social care and
support. The advent of Putting People First and personalisation means that
organisations will need to become more accountable to their service users and
the communities that rely on them. All the evidence suggests that the more an
organisation is led and owned by those people, the more likely it is that it will
deliver services that are useful and wanted and which help people to achieve
their goals in life.
We hope you find the Support Pack valuable in shaping the direction of your
organisation, the support you deliver, and ultimately the impact you have on
people’s lives.
Keith Hinkley
Director of Adult Social Care
East Sussex County Council
Nick Tapp
Chief Executive
East Sussex Disability Association
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Kristina Veasey, Mentee as part of the East Sussex User-Led
Organisations Demonstrator Site Project
I have heard on more than one occasion people say that becoming a ULO
would be “like letting the loonies run the asylum” – which (aside from clearly
demonstrating the attitudes and prejudices faced by people experiencing
mental health issues) led me to wonder what reasons there might be for such
resistance to what is for me, unquestionably, a positive and long-awaited step
forward.
I was interested to see that this Support Pack discusses some of the anxieties
individuals have around their organisations becoming user-led. Some of these
are reflective of those I encountered during my time as a mentee and are also
concerns that I have come across in my wider experience as a consultant and
equalities trainer. I do not think these worries are unusual but are an indicator
that as a society we do not yet have a social model approach to service
provision.
The key underlying anxieties individuals working in organisations have
presented through their comments and questions have related to concerns
around no longer being in control of what’s happening, feeling that they are no
longer needed or wanted, being unappreciated and undervalued, and a
reluctance to ‘let go’ of something they have spent time and effort investing in
and watching grow – a fear of loss.
This is all quite poignant as these are the feelings that many disabled people
already experience as a result of the barriers they face in their everyday lives. I
say this as a person with direct experience of disability and as someone with
many years of experience working in advocacy and consultation with disabled
people. Nobody wants to experience these feelings but for disabled people the
lack of control, choice and opportunity resulting from existing approaches to
service delivery means that these feelings are inescapable and renders them
dependent and disempowered. Ironic really as most organisations are set up to
help the people they serve!
Fortunately, these are the very things that becoming user-led should help to
overcome.
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For those non-disabled individuals facing these anxieties around their
workplace becoming user-led, there is no easy answer. Change is often
uncomfortable. However, what I hope will make it easier for them is knowing
that committing to becoming user-led will make a big difference in redressing
the balance of equality for disabled people, and in ensuring that their rights are
respected and realised. It is my hope that this toolkit will help organisations to
better understand and embrace the theory behind becoming user-led, and help
to highlight the benefits that it will have for the disabled people involved in their
organisations.
For those of you who are already making the commitment and signing the
resolution, this toolkit will be an invaluable aid. It provides comprehensive and
insightful advice and resources to assist you on your journey to becoming a
ULO. It will guide you on ways to support and enable, and in turn, allow you to
become truly responsive to the needs of your constituents. It will place you
firmly at the front of a cultural change in service provision, as well as providing
other organisations with models of good practice on which to build.
Kristina Veasey
Mentee
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Section 1: Introduction to the Support Pack
Acknowledgements
Thanks is extended to all those who gave their time and expertise towards
contributing to the production of this ULO Support Pack through the East
Sussex User-led Organisations (ULO) Demonstrator Site Project.
The project was funded by the Department of Health, and was managed by
East Sussex County Council’s Adult Social Care Third Sector Development
Manager.
Those involved were:
Consultants
 Jeni Price Lupton
 Sarah Playforth
 Theresa Hodge
Project Board and Mentees
 Adrian Ley (Eastbourne Blind Society)
 Claire Debenham (East Sussex County Council)
 Georgina Baker (Headway Hurstwood Park)
 Gerry Harris (Headway Hurstwood Park)
 Jean Bradbery (Mentee for Care for the Carers)
 Kristina Veasey (Mentee for ARRCC)
 Mary Colato (East Sussex Association of Blind and Partially Sighted
People)
 Mitchell Sasse (Mentee for Headway)
 Paul Burchett (Mentee for Diversity Resources International)
 Reg McLaughlin (East Sussex Disability Association)
 Roy Neeve (Mentee for ESAB)
 Steve Saunders (Mentee for Anchor Housing Trust)
Participating Organisations
 Age Concern East Sussex
 Anchor Housing Trust
 Adult Respite Rehabilitation Care Centre (ARRCC)
 Care for the Carers
 Diversity Resources International (DRI)
 East Sussex Association of Blind and Partially Sighted People (ESAB)
 Hastings and Rother Multiple Sclerosis Society
 Headway Hurstwood Park
 Sussex Oakleaf
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Overview And Purpose of the Support Pack
The ULO Demonstrator Site project was funded by the Department of Health
and took place from October 2009 to March 2010. It was led by a team of
disabled consultants working on behalf of East Sussex Disability Association
(ESDA), and it enabled a number of organisations working with disabled people
and carers to receive a package of training and consultancy support to help
them work towards becoming user-led organisations.
The project also provided a mentoring programme, where disabled people were
provided with work experience opportunities. Each of the mentees worked
alongside a disabled consultant to provide support to the participating
organisations, and some also became members of the Project Board which
oversaw the work of the project.
The ULO Support Pack aims to provide voluntary and community (third) sector
organisations with the information that they need to enable them to work
towards becoming a ULO. The resources provided in this Support Pack have
been produced by disabled consultants, drawing on their experience and
knowledge of user-led organisations, as well as existing resources available on
the National Centre for Independent Living (NCIL) website. Resources
requested by organisations taking part in the project have also been included,
which were felt to be helpful to them and other organisations developing as
ULOS. The areas covered in the following sections are:
Section 2: Explaining User-led Organisations
 Information on what user-led organisations are and why they are
important, and the essential elements of a user-led organisation.
Section 3: Defining User-led Organisations
 A series of informative chapters on how organisations can meet the
Department of Health’s 21 User-led Organisations (ULO) Design
Criteria.
Section 4: Training
 An introduction to the role of disability equality training in user-led
organisations.
Section 5: Mentoring
 The role of mentoring, peer support and champions within developing
user-led organisations.
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Section 6: Challenges for Developing User-led Organisations
 Some common hurdles experienced by organisations developing as
ULOs and possible solutions
Appendices
 Background Supporting Information around some key principles behind
user-led organisations, useful tools and useful resources.
The Social Care Institute for Excellence (SCIE) has produced a toolkit for
commissioners of services from user-led organisations. This is available from
www.scie.org.uk.
Why Should My Organisation Become a User-led Organisation?
ULOs are organisations where their constituents take the majority role in
managing the organisation, deciding on their priorities and how they should be
addressed. These organisations promote independent living, promote people’s
human and other legal rights, and enable service users to exercise choice and
control in their lives. They are also aware of the diverse needs of the local
population and contribute to meeting those needs.
There is considerable commitment nationally to ensuring that ULOs play a key
role in the provision of local services. In keeping with national Putting People
First policy, East Sussex Adult Social Care recognises the potential that User
Led Organisations and other “experts by experience” have to play in
supporting and increasing choice and control for service users, enabling
personalisation to become mainstream.
There are a number of services which ULOs could have a greater role in
providing. These could include, for example:
 the full range of information, advice and advocacy services
 person-centred support planning and brokerage services
 a variety of care and support services
 one to one support to access specific training (and funds) needed to
improve skills as an employer or for directly employed support workers
and unpaid carers
 employer induction for people wanting to employ their own support
staff through self directed support
 Personal Assistant Induction
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ULOs can bring “added value” to these kinds of services. This is because they:
 work locally with and for local people
 have specialist expertise
 have a track record of highlighting barriers which exist for many
marginalised groups and finding innovative ways of overcoming them
 can provide peer support
 have the ability to work with ‘hard-to-reach’ groups in involvement and
consultation activities (and in partnership with other ULOs, can be even
more effective in this area).
Case Study 1
This organisation is a relatively young organisation working with a specific
marginalised group in the community with no paid staff.
Support was provided to the organisation through the East Sussex ULO
Demonstrator Site project, via a disabled consultant and a mentee.
Training in the social model of disability was also offered to the
organisation’s Management Board and service users.
The consultant and mentee met with two board members early in the
project’s consultancy period (January-March 2010). It was clear that the
advantage of being a young organisation was that they already had an
inclusive approach that was committed to user involvement at every level.
Conversely their disadvantage was in not having a robust funding system
in place. At this meeting the discussion was mainly around how this
organisation could secure funding to become fully established and employ
paid staff. It was recognised that they would need to widen the scope of
possible funding sources and the consultant gave several examples.
The discussion also looked in some detail at the social model and how to
apply it to increase accessibility to the events run by the organisation. An
accessibility checklist was requested and this was noted to be included in
the Support Pack.
The consultant and mentee then attended an event run by the
organisation to network with service users; this raised useful information
about what service users felt was needed, for example jargon free
versions of the ULO briefing for Boards and template resolution. The
consultant talked with a service user who had recently agreed to join the
board.
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Some emails were exchanged relating to accessibility issues.
The consultant offered additional support to develop the draft action plan
provided and to provide a briefing on the training content as it had not
been possible to arrange attendance at a training session. A meeting has
been confirmed to provide this support.
Conclusion
This organisation needs a lot of financial and other support to continue its
work and to develop; however it is in a very good cultural position and is
already user led for the most part. There is too much work devolved on
too few people and no paid staff. Users would benefit from support and
training to enable them to contribute more to the running of the
organisation and to become board members, as one person already has.
There is also a need to develop more partnership work – the contacts
exist but due to the voluntary nature of the organisation, it is difficult to
nurture these and to derive benefit from them.
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Section 2: Explaining User-led Organisations
User-Led Organisations: What Are They and Why Are They
Important?
This chapter summarises what a User-led Organisation (ULO) is, why this
model of organisation is important and how it might be formally constituted or
governed.
A ULO is one where people who come from the group or groups which the
organisation is designed to serve (its ‘constituency’) take the majority role in
managing the organisation, deciding on its priorities and how they should be
addressed. In the context of this Support Pack, the constituency might be
disabled people, carers and/or others who use support (and it is important to
remember that some people may identify with more than one of these groups).
The organisation’s work should be informed and driven by the needs and
wishes of its constituency. It should operate in a way which removes any
barriers to full participation of its constituents and the organisation must be
accountable to that constituency. A number of the Department of Health design
criteria for ULOs deal in more detail with the issue of who controls and
manages the organisation, and these are covered in the relevant chapters
elsewhere in this Support Pack.
The second essential element of a ULO is that its work should be underpinned
by, and based on, the social model of disability. As well as being explicitly
stated in the ULO’s constitution, working from the social model perspective
should inform and affect all its activities. This is explained in more detail in the
chapter “Meeting the Design Criteria 1: The Foundations of the Social Model”.
Why is Being “User Led” So Important?
The initiative to encourage organisations to become user led has, in part, come
from the development by disabled people of Centres for Independent Living
(CILs) and similar organisations. It is widely recognised that ULOs have a vital
role to play in the development of the current independent living agenda.1
User involvement has led to greater empowerment of individuals and groups,
increased participation in and contribution to wider society. It has made
services more effective, relevant and appropriate for users and in many areas
has resulted in significant and positive changes to the way in which services are
delivered.
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“Services can be greatly improved by the people who use them having a
leading role in delivering, monitoring and evaluating services. User-led
organisations can play a key role in consultation processes because they have
a knowledge base about issues around local service provision. They can also
advise on practical issues on involving more marginalised groups in
consultation”.2
For this reason, the Department of Health has committed to supporting the
continued development of ULOs.3 It is evident that ULOs will have significant
advantages as providers of services for disabled people, carers and others
using support as the ‘personalisation’ of social care and health continues and
the current vision of independent living is further developed.
How is a ULO Set Up?
Most organisations using this Support Pack to help them work towards being
user-led will already be formally constituted, legal bodies. If this is not the case,
advice should be sought as to the most appropriate model for that organisation.
Appendix 1 of this Support Pack provides information on the range of different
structures for ULOs. Your local Council for Voluntary Service can also provide
advice on this area.
Essential Features of a User-Led Organisation: The Department
of Health’s ‘Design Criteria’
The Department of Health’s research and consultation work around User-led
Organisations (ULOs) identified a number of criteria which organisations need
to meet to be identified as a “Life Chances ULO”. This refers to
recommendation 4.3 in the Government’s report “Improving the Life Chances of
Disabled People”4 that by 2010, each locality (defined as an area covered by a
Council with social services responsibilities) should have a ULO modelled on
existing Centres for Independent Living.
The 21 design criteria aim to define the key requirements to be a viable and
sustainable ULO. The Department of Health policy acknowledges that these
criteria may be met in a variety of ways according to local demand, resources
and circumstances.5
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For ease of reference, the 21 design criteria have first been listed in this
chapter as they appear in the Department of Health’s policy document –
grouped under criteria relating to the values underpinning the organisation and
those relating to the organisational issues. In the second part of the chapter,
there is more explanation of each of the criteria (and the numbering DC1, DC2
etc. refers to the order in which the design criteria [DC] appear in the original
list). This commentary is based on the ‘rationale’ in the Department of Health’s
policy document.6
Not all ULOs are, or aspire to be, a CIL. Many other smaller organisations may
be involved in just some of the activities or services associated with CILs. They
are likely to be part of a local federation or network of ULOs working with, or
combining to provide the services of a full CIL. Organisations working towards
becoming user-led may take some time to meet all the design criteria, but these
are central to any organisation’s progress towards becoming a ULO. In other
chapters in this Support Pack there is further, practical information about how
organisations can achieve the design criteria.
Values
1) Works from a social model of disability perspective.
2) Promotes independent living.
3) Promotes people’s human and other legal rights.
4) Shaped and driven by the initiative and demand of the organisation’s
constituency.
5) Is peer-support based.
6) Covers all local disabled people, carers and other people who use
support either directly or via establishing links with other local
organisations and networks.
7) Is non-discriminatory and recognises and works with diversity in terms of
race, religion and belief, gender, sexual orientation, disability and age.
8) Recognises that carers have their own needs and requirements as carers.
9) Engages the organisation’s constituents in decision making processes at
every level of the organisation.
Organisational Criteria
10) Provides support to enable people to exercise choice and control.
11) Is a legally constituted organisation.
12) Has a minimum of seventy five per cent of the voting members on the
management board drawn from the constituency of the organisation.
13) Is able to demonstrate that the organisation’s constituents are effectively
supported to play and full and active role in key decision-making.
14) Has a clear management structure.
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15)
16)
17)
18)
19)
20)
21)
Has robust and rigorous systems for running a sustainable organisation
(e.g. financial management / contingency planning).
Is financially sustainable as there will be no ongoing central government
funding.
Has paid employees, many of which must reflect the organisation’s
constituency.
Identifies the diverse needs of the local population and contributes to
meeting those needs.
Is accountable to the organisation’s constituents and represent their
views at a local level.
Supports the participation of its constituents in designing, delivering and
monitoring the organisation’s services.
Works with commissioners to improve commissioning and procurement.
Detail Behind The Design Criteria
Principles of diversity, the social model of disability, independent living, peer
support and accountability must underpin the values from which ULOs work.
ULO Values
DC1. Works from a social model of disability perspective
One of the defining features of a ULO should be that it works from a social
model of disability perspective. This is a way of explaining that the individual
disabled person is not the ‘problem’, rather, the ‘problem’ is that disabled
people (which includes people with physical, intellectual or sensory impairments
or long-term conditions) are disadvantaged, and often discriminated against, by
the way society is built and organised. As the social model of disability is a
fundamental principle from which ULOs work, a separate chapter has been
included in the Support Pack to provide more information.
DC2. Promotes independent living
Independent living is defined as “all disabled people having the same choice,
control and freedom as any other citizen – at home, at work, and as members
of the community. This does not necessarily mean disabled people doing
everything for themselves, but it does mean that any practical assistance
people need should be based on their own choices and aspirations.”7 A
separate chapter on Promoting Independent Living is included in the Support
Pack.
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DC3. Promotes people’s human and other legal rights
Promoting human and other rights is an important feature of ULOs. Examples
of how it might be done include supporting people to have their human rights
met under the Human Rights Act 1998, and working with people to exercise
their rights as citizens, such as through participating in democratic processes
like voting in elections, or enabling them to access services, benefits and
community resources.
DC4. Shaped and driven by the initiative and demand of the
organisation’s constituency
Providing services which are shaped and driven by an organisation’s service
users gives added value because, as well as having local knowledge and
networks, they have the ability to present the authentic voice of service users
who know what works for them.
DC5. Is peer support based
Peer support is fundamental to the way ULOs operate. This is where disabled
people, carers and other people who use support come together to support
and/or provide a service to other disabled people, carers and other people who
use support. The shared experience of similar backgrounds or circumstances
means that peer support is built on the value of personal experience.
DC6. Covers all local disabled people, carers and other people who use
support either directly or via establishing links with other local
organisations and networks
It is recognised that many organisations are set up primarily to work with
specific groups of people. However, if there are particular client groups that
they do not currently provide services to, they need to find ways of working
actively, either individually or via local alliances or wider networks, to establish
working relationships and ensure the needs of different groups are
appropriately met.
DC7. Is non-discriminatory and recognises and works with diversity in
terms of race, religion and belief, gender, sexual orientation, disability
and age
This means that rather than simply saying that an organisation works with all
disabled people in terms of their impairment, it must actively reach out to all
sections of the community who are disabled people, e.g. disabled people from
Black and Minority Ethnic (BME) backgrounds, those who are lesbian, gay,
bisexual or transgender (LGBT), people of different ages, and so on.
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DC8. Recognises that carers have their own needs and requirements as
carers
It is important to accept that disabled people and other people who use support
often have different issues than those faced by carers. However, they are not
inherently competitive by nature. There needs to be room within ULOs for
different interest groups to collaborate, or work separately where necessary, so
that the interests of all groups are accommodated without anyone feeling
compromised.
The fact that someone is a carer does not preclude them from having a strong
commitment to independent living and the social model of disability. It is
possible for disabled people and carers to work together on common areas of
concern or interest, at the same time being very clear about where the
differences between them lie and work separately on those areas.
If the ULO has a constituency of carers and disabled people and other people
who use support then carers are likely to be part of the decision-making
process. However, where an organisation is comprised of different groups of
people then all those groups have to sign up to the values and characteristics
that are set out in the ULO Design Criteria.
There is a growing acknowledgement that carers have perspectives and
support needs of their own, such as peer support, advocacy, direct payments,
information, advice, user involvement and so on.
It should also be noted that some carers may also be disabled people or others
who use support services, so the two groups may have considerable areas of
overlap.
The chapter “Carers, Networks, Partnerships” in this Support Pack highlights a
number of other issues about the involvement of carers in ULOs.
DC9. Engages the organisation’s constituents in decision making
processes at every level of their organisation
ULOs need to ensure the involvement and employment of their users at all
levels of the organisation. This means that they need to be involved in making
executive decisions (e.g. exercising control over policy or resources), as well as
a variety of other ways in paid or unpaid positions (e.g. providing peer support,
delivering services and being involved in monitoring).
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ULO Organisational Criteria
DC10. Provides support to enable people to exercise choice and control
Enabling people to exercise choice and control over their own lives lies at the
heart of what ULOs should be doing.
DC11. Is a legally constituted organisation
It is acknowledged that different organisational structures may be needed to fit
different local circumstances and organisational histories and that ‘one size’ will
not fit all. However, ULOs wishing to be employers, to be commissioned to
provide services or take on other activities like training or consultancy will need
to be a legally constituted organisation such as a registered charity, company
limited by guarantee, not-for-profit, Community Interest Company or social
enterprise. This decreases the risk and liability of those managing the
organisation.
DC12. Has a minimum of 75 per cent of the voting members on the
management board drawn from the organisation’s constituency
With 75% of the voting members being drawn from the organisation’s
constituency there is room for having co-optees or board advisors who offer
additional expertise or experience that the board may need.
DC13. Is able to demonstrate that the organisation’s constituents are
effectively supported to play a full and active role in key decision-making
For an organisation to be effectively run and let by its service users, its
constituents need to be able to play a full and active role in decision making.
This means that disabled people, carers and other people who use support
should have their access needs addressed and be fully supported through
training, mentoring, ‘buddying’ and other support to be able to play a full and
active role in decision making.
DC14. Has a clear management structure
Given that accountability is fundamental to a ULO and how it works, it is
essential that clear management structures are in place. Although it is
recognised that some smaller organisations may rely on one or two people to fill
several roles, this can create problems if one of those people leaves the
organisation, as the expertise and knowledge of the organisation will go with
them.
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DC15. Has robust and rigorous systems for running a sustainable
organisation (e.g. financial management/contingency planning)
Factors considered critical to the operation and sustainability of a ULO include:
 having fully trained board / committee members or staff, especially in
legal and financial matters
 the ability to develop organisational resilience in the face of change
 being prepared to engage in democratic processes and influence local
policy makers
 the ability to understand the power dynamics within organisations
themselves as well as in the locality.
DC16. Is financially sustainable as there will be no ongoing central
government funding
Although it is recognised that uncertainty about funding is a key factor for many
organisations, it is important to have exit strategies for when funding ends.
Limited or uncertain income is seen to inhibit potential for the expansion and
development of services. A strong relationship with the local authority can help
with securing on-going funding.
DC17. Has paid employees, many of whom must reflect the organisation’s
constituency
ULOs need to be organisations that employ disabled people, carers and others
who use support as well as have them as volunteer board or committee
members. The capacity of an organisation can be limited because of a lack of
paid staff. Volunteers play an important role in the operational activity of
organisations but an over-reliance on volunteers can potentially leave an
organisation in a vulnerable situation.
DC18. Identifies the diverse needs of the local population and contributes
to meeting those needs
Involving an organisation’s constituents in the running of its services gives
added value because, as well as having local knowledge and networks, they
have the ability to present the authentic voice of service users who know what
works for them. Particular areas of expertise within ULOs can include
knowledge about access, participation and empowerment issues, provision of
peer-led support, mentoring, advocacy and self-help techniques.
Using local knowledge and expertise to identify the diverse needs of the local
population and contributing to meeting those needs is fundamental to the way
ULOs operate.
19
DC19. Is accountable to the organisation’s constituents and represent
their views at a local level
Organisations established by local people are in a very good position to support
their constituents in engaging with services and also representing their interests
(where appropriate). A ULO should be able to say what its constituents want
locally and be able to work with a range of statutory and voluntary sector
organisations to improve local communities and resources. This may mean
that the organisation adopts a campaigning and networking role.
In order to function as a ULO it is extremely important that the organisation,
particularly in terms of its management board, is accountable to its constituents.
This may be through a formal membership system with everyone having voting
rights, or there may be more loosely defined systems for ensuring
accountability such as open meetings or some form of quality assurance
mechanism. ULOs need to find ways to involve members in governance, or
consult ordinary members, rather than simply relying on them turning up at
meetings. This requires resources.
DC20. Supports the participation of its constituents in designing,
delivering and monitoring of the organisation’s services
In addition to providing services, ULOs can work with their constituencies so
that the organisation (on its own or with other local ULOs) may be involved with:
 disseminating information about what accessible features, environments,
support and facilities are required for participation to be inclusive to all
 providing support for consultation and involvement
 providing interpreting and transcription services
 access auditing
 providing or being involved with Disability Equality and diversity training
 disseminating knowledge of the DDA and other disability specific
legislation
 accessible housing and transport
 delivering research, consultancy and training.
DC21. Works with commissioners to improve commissioning and
procurement
ULOs are in an ideal position to work with public bodies on not only meeting the
Disability Equality Duty, but also in terms of fulfilling duties to involve disabled
people, carers and other people who use support in developing policy and
practice. There is potentially a real strength for local authorities and other
public sector organisations (e.g. NHS bodies) in working with ULOs in building
local communities and raising service standards.
20
ULOs can save money for public bodies by their involvement in preventative
work and through new ideas about the best way to provide support and
services for disabled people.
It is important to build relationships with public bodies, and also for disabled
people, carers and other people who use support to be involved in setting
specifications for services or designing outcome measures. Evaluation of
services should not be based on activity levels, but instead on outcomes.
Case Study 2
This organisation is a longstanding locally based impairment specific
organisation with a constituency mainly of older people with this
impairment
A disabled consultant and a mentee worked with this organisation as part
of the East Sussex ULO Demonstrator Site project. Training was also
provided to the organisation’s Management Board and service users.
The consultant and mentee had meetings with the Chief Executive, who is
a strong supporter of user involvement and has already laid the
foundations for becoming user led. Subsequently the consultant and
mentee attended a Board meeting and presented a briefing document
and a Resolution, which the Board were asked to ratify to show their
commitment to becoming a ULO. The Board agreed and signed the
Resolution after an hour of intensive questioning and discussion.
The consultant attended the next user forum meeting to further explain
the criteria for becoming user led and to answer questions; because the
Chief Executive and chairperson of the forum had briefed service users
well, there were a minimum of questions and most of the discussion
hinged on the impact being user led could have on one particular issue of
importance to the organisation. A question was asked about funding for a
specific item of equipment to support the increased involvement of the
organisation’s constituents, which the consultant recommended be taken
to the ULO Demonstrator Site project board.
The consultant then had a meeting with the mentee to discuss the next
steps to be taken and also with the chairperson of the user forum.
Additional support was offered to the Chief Executive, staff and user
forum to develop the draft action plan.
21
Conclusion
This organisation has benefited enormously from an energetic Chief
Executive who is committed to the principle of user influence. They have
an active and effective chairperson of the user forum, who will be a key
person in taking things forward. But it is not clear that this will easily
translate into user leadership, since the very fact of this commitment and
their admirable enthusiasm and activity could potentially work against
other users also feeling enabled and empowered to contribute their views
and input to future planning. More work is needed to encourage them to
speak up and make their voices heard, to be able to move beyond their
own personal issues become involved and not to leave future user led
development work to a few vocal people. This organisation has a
constituency that has become very used to having decisions made for
them, to being “taken out” and to being “done to” alongside a Board that
has changed little over the years and which still has members with
traditional views. It needs to unlearn a number of cultural constructs
before it can meet a majority of the ULO criteria. It is important for them
to move quickly on reviewing and revising its constitution, as it is many
years since this was done. There are two partner organisations working
with the same impairment group covering distinct geographical areas. it
has been a challenge for this organisation to bring the three together to
share and work towards a common aim to become user led, but work is
currently progressing in this area.
22
Section 3: Defining User-Led Organisations
Meeting The Design Criteria: Grouping The Design Criteria Into
Related Topic Areas
The following chapters in this section of the Support Pack are designed to
assist organisations which are committed to achieving the Department of
Health’s 21 design criteria for user-led organisations (ULOs). The chapters
deal with related groups of criteria as follows:
(1). The Social Model
DC1.
Works from a social model of disability perspective
DC2.
Promotes independent living
DC5.
Is peer-support based
DC10. Provides support to enable people to exercise choice and control
(2). Diversity and Rights
DC3.
Promotes people’s human and other legal rights
DC7.
Is non-discriminatory and recognises and works with diversity in terms
of race, religion and belief, gender, sexual orientation, disability and
age
DC18. Identifies the diverse needs of the local population and contributes to
meeting those needs
(3). The Organisation’s Constituency
DC4.
Shaped and driven by the initiative and demand of the organisation’s
constituency
DC9.
Engages the organisation’s constituents in decision making processes
at every level of the organisation
DC12. Has a minimum of seventy five per cent of the voting members on the
management board drawn from the constituency of the organisation
DC13. Is able to demonstrate that the organisation’s constituents are
effectively supported to play and full and active role in key decisionmaking
DC19. Is accountable to the organisation’s constituents and represents their
views at a local level
DC20. Supports the participation of its constituents in designing, delivering
and monitoring the organisation’s services
23
(4). Carers, Networks, Partnerships
DC6.
Covers all local disabled people, carers and other people who use
support either directly or via establishing links with other local
organisations and networks
DC8.
Recognises that carers have their own needs and requirements as
carers
(5). A Sustainable Organisation
DC11. Is a legally constituted organisation
DC14. Has a clear management structure
DC15. Has robust and rigorous systems for running a sustainable
organisation (e.g. financial management / contingency planning)
DC16. Is financially sustainable as there will be no ongoing central
government funding
DC17. Has paid employees, many of which must reflect the organisation’s
constituency
(6). Commissioning
DC21. Works with commissioners to improve commissioning and
procurement
Meeting The Design Criteria 1: The Social Model
The first of the Department of Health design criteria is that all User-led
Organisations (ULOs) should ‘work from a social model of disability
perspective’. This is in the criteria relating to the values of the organisation, but
when understood and implemented, it also has a significant practical impact.
Committing the organisation to this approach and putting it into practice will
have a positive impact on each element of the organisation’s strategy, on all of
its practices, policies and procedures and on how it carries out its daily
business.
An organisation’s written values or mission statement, and any other policy
documents, should reflect the key principles of the social model, showing how
this approach is adopted in the day-to-day working of the organisation.
This chapter shows that the social model of disability is not simply a set of ideas
or philosophical approach, rather it is an empowering and very practical tool
which underpins independent living.
24
A Different View
Essentially the social model of disability reverses traditional and individualistic
approach of seeing the disabled person as the ‘problem’ that has to be solved
(cured, cared for or ‘managed’). Instead, the social model approach identifies
society and its structures as disabling factors for people with impairments
(whatever the nature of their condition, which may relate to physical, sensory or
intellectual impairment, mental health issues or learning difficulties).8
The key questions are no longer ‘What’s wrong with him/her?’, ‘What is the
name or nature of this person’s impairment?’ or ‘How severe is the condition?’,
for example. The answers to such questions do not produce the right
information to help people identify what action can be taken to enable
participation in family life, work, the community or society.
Taking a social model approach, the relevant questions become ‘What external
barriers prevent him/her from participating in day to day life?’, ‘What support
can be put in place to enable this person to play a full role?’ or ‘How can things
(the environment, the ways things are usually done) be changed to enable them
to be included?’, for example. The answers to these questions produce a
practical action plan. Similarly, from a social model perspective, descriptions
change from ‘He cannot do this...’, ‘Her impairment prevents her from...’ to ‘He
experiences these barriers to doing this...’, ‘Putting [x] in place would enable
her to...’.
By turning thinking around in this way, it becomes apparent that the ‘disability’
arises as a result of the existence of barriers in, for example, housing provision,
work, access to health services, domestic and social life, travel, culture, leisure,
societal and individual attitudes. The main barriers are often identified under
broad headings:
 physical environment barriers
 communication and information barriers
 institutional, administrative and organisational barriers
 societal culture and attitudinal barriers.
25
A Truly Inclusive Approach
This focus on dismantling the barriers rather than changing the person makes
the social model highly relevant when addressing other areas of disadvantage
and discrimination. It is helpful for describing many of the barriers experienced
by other marginalised groups or individuals, for example, people from black and
minority ethnic communities, people from the gay, lesbian, bi-sexual and
transgender communities, people who experience age discrimination, among
others. And, of course, disabled people, carers and others who use support
often identify with more than one of these groups.
For example, disabled people, carers or others who use support who approach
traditional services for them may find, if they are gay, are from a black or
minority ethnic background or from another oppressed or disadvantaged group,
that the culture of the organisation from which they seek support in relation to
their impairment discriminates against them on the basis of these issues.
Applying basic principles of accessibility, inclusion and equality in relation to all
groups that experience oppression and discrimination can enable people to
avoid a “them and us” approach, which sees some people as different and
therefore as problems to be dealt with. Instead this inclusive social model
approach asks people to consider what barriers exclude people and how they
can be removed.9
“The social model is, after all, about disabled people speaking for themselves
and saying how society is disabling them. The experience will be different if
you are black, an ethnic minority, lesbian, gay, or a woman and this needs to be
taken into account.”10
“We need to ‘emphasise the ordinariness of our lives - show that we are just
ordinary people living ordinary lives. We are not special.’ Being ‘ordinary
people’ means challenging traditional attitudes to disabled people as medical
cases and objects of charity and care, pity and protection. People who are seen
as in need of ‘care’ or as ‘vulnerable’ are not seen as capable of self
determination and full citizenship.”11
26
Impairment is a Reality
The social model of disability does not deny the existence of someone’s
impairment or condition – for many people pain, fatigue and periods of health
‘crisis’ are a reality, and there are times when people need emotional and
personal support as a result of issues arising from impairment.
Taking a social model approach, however, means looking for solutions to
situations where impairment issues might adversely interact with daily life.
Sometimes these can be simple solutions such as providing more comfortable
seating arrangements, rest areas, regular breaks from work, meetings or
activities; at other times the solutions may be more complex, such as
developing flexible working arrangements or changing the way consultations
are carried out so that people do not have to be present at a meeting to
contribute.
Many smaller organisations, including some of those using this Support Pack
who are committed to becoming user-led, have been set up as groups which
work with people with specific impairments. In the past there may have been a
focus on providing impairment-specific advice and information on treatment,
care services and condition management. Some are part of larger
organisations which also conduct research into treatments and cures for
specific impairments and conditions. Most, but not all, of these groups have
worked to a medical model of disability – i.e. they focus on managing, and in
some cases curing, the impairment or condition.12
Very often disabled people and others who use support find it empowering to
have information about their particular impairment or condition, and there is
clearly a place for providing that. Even more valuable in the longer term is an
approach which moves on from medical and related information, and starts to
look at tools for independent living. Examples may include peer support to deal
positively with the reality and consequences of impairment, provided in a way
which helps people to identify specific, external barriers which prevent them
living the life they want. Supporting people to develop knowledge, skills,
information and strategies to tackle those barriers, provides them with tools for
independent living.
In talking about impairment, it is important to note that some individuals or
groups may not consider their conditions, situations or circumstances as
impairment (or ‘disability’). For example, people in the Deaf community often
identify with the concept of external barriers to participation but would not
consider the fact of being deaf as having an impairment.
27
Dismantling The Barriers
External barriers can be removed, very often impairment or condition cannot
be. Taking a social model approach is about developing an action-centred way
of working towards dismantling barriers for individuals and groups, and creating
a more inclusive society. “The [social model] approach does not suggest that a
person needs ‘rehabilitation’ in order to exist in an inaccessible world. It says
that the world needs adapting in order to accommodate the disabled person.
This is central to independent living philosophy.”13
Using the broad heading of barriers identified earlier, some examples include:
Physical environment barriers – It is not just wheelchair users or people with
mobility issues who experience environmental barriers. In addition to obvious
examples such as barriers created by steps, stairs, lack of lifts, heavy doors,
narrow doorways, heights of desks, work surfaces, notice-boards, information
racks etc., environmental barriers are also created by unsuitable floor
coverings, reflective surfaces and mirrors in inappropriate places, poor lighting,
difficult way-marking and directions, bad acoustics and other things which may
affect people with sensory and/or neurological impairments. In a broader
sphere, physical and environmental barriers exist in relation to transport,
housing, access to leisure facilities and many other areas.
Communication and information barriers – Assuming that everyone
accesses information in a standard format and communicates through the
spoken word will automatically create barriers. In various situations,
information needs to be presented in various accessible formats (standard and
large print, easy read format with pictures, electronically, on audio tape, with
BSL interpretation and in Braille are some of the common formats) and
websites should be made accessible. Numerous guides exist to producing
information in accessible formats and ensuring that websites comply with
access standards.14 Various methods of communication support (such as
British Sign Language or Sign Supported English interpretation, lip-speakers,
note takers, one to one communication support) are ways of dismantling
barriers.
28
Institutional, administrative and organisational barriers are those which are
potentially created by rules, regulations, policies, practices and procedures
which impact negatively on disabled people, carers and others who use
support. Inflexible ways of operating (‘this is the way we have always done it’)
will inevitably result in barriers for some people. For example, barriers can
arise when: a complaints or feedback procedure requires someone to put their
comments in writing to start the process; an information service only operates
by telephone; events do not allow sufficient time for input from people who take
longer or need support to communicate; information for meetings is not
circulated well in advance (in appropriate formats for participants);
disempowering language is used in organisational literature; procedures for
adapting homes or providing technical equipment are lengthy, involve
numerous agencies and limit choice etc.. Equality Impact Assessments are a
formal way of looking at whether there are barriers of these types in the
organisation, but if everyone in the organisation develops an understanding of,
and sensitivity to, barriers, they can be identified and tackled on an on-going
basis.
Societal culture and attitudinal barriers are those which are created both by
wider society and individuals. For example, the stereotypes, prejudices or
assumptions about disabled people’s lives which operate at an individual level,
have resulted in cultural barriers.
Disabled people are still frequently perceived as being in need of care, pity,
protection and sympathy. Patronising attitudes at an individual and societal
level have contributed to barriers to a truly inclusive society and achieving full
civil and human rights for disabled people. The assumptions about disabled
people’s lives which are made when there is no input from disabled people,
carers and others who use support can lead to very practical barriers, such as a
shortage of accessible toilets with adult changing facilities; lack of sub-titling on
films and television; complex and discriminatory procedures for disabled people
wanting to move to another area of the country, etc.
The Social Model Underpins Independent Living
The social model of disability is the foundation of independent living.
Organisations which are involved with, for example, work around individual
budgets will find that operating to the social model will be vital for supporting
service users. Self assessments and support planning can then concentrate on
how people will achieve the outcomes they wish and in that process tackle any
barriers which may exist to achieving those outcomes.
29
Meeting The Design Criteria 2: Equality, Diversity and Rights
A number of the Department of Health’s design criteria for User-led
Organisations (ULOs) relate to diversity and rights. These are:
 DC3. Promotes people’s human and other legal rights.
 DC7. Is non-discriminatory and recognises and works with diversity in
terms of race, religion and belief, gender, sexual orientation, disability
and age.
 DC18. Identifies the diverse needs of the local population and contributes
to meeting those needs.
This chapter outlines some of the issues which organisations need to address
when considering how they meet the relevant criteria and provides some
examples for doing so.
Harnessing Diversity
The diversity and inclusiveness of a ULO is a source of strength and will
enhance its credibility and standing in the community. It should therefore be a
key aim of all ULOs.
“In a landmark lecture, Baroness Jane Campbell (2008) spoke of the dangers
of not being alert to ’the diversity of the characteristics and experiences of
disabled people, and to the causes of the barriers which prevent equality’. She
talked of the risk presented by the ‘overly narrow representation of disabled
people... which denies the complexity of people’s lives, the multiplicity of their
identifications, and the cross-pulls of their various affiliations. The rich diversity
of disabled people has too often been reduced to the wheelchair symbol’.”15
In other words, disabled people, carers and others who use support come from
all sections of the community and a ULO which is truly representative needs to
involve a wide range of people in all parts of the organisation. It is not sufficient
to say that people from, for example, black and minority ethnic communities do
not apply for membership, or come to meetings – it is important to reach out
actively to those communities which are currently under-represented. Only by
going out to different communities, asking questions and getting feedback, can
a ULO ensure that it is not creating barriers to involvement and is actively
engaged with topics relevant to all sections of the community.
30
Similar issues may arise with ULOs as with traditional services for disabled
people, carers or others who use support. People may find, if they are gay,
lesbian, bi-sexual or a transgender person, are from a black or minority ethnic
background, a young person or an older person, that the culture of the ULO
discriminates against them on the basis of these issues. Having a broad range
of people from all communities involved in the organisation and its decisionmaking structures will ensure a continuous dialogue and constant input from
different perspectives which will enrich the organisation.
Impairment Diversity, Community Diversity
The challenge is also to consider diversity within impairment and think about
how the organisation responds positively to that. How does an organisation
primarily focussed on, for example, supporting people with visual impairments
make itself relevant to a young black person with a visual impairment and a
learning difficulty?
Issues such as:
 ensuring the use of inclusive language
 having a variety of different types of activity that will appeal to a broad
range of people
 maintaining an awareness of current topics relevant to specific groups16
which might warrant a local event or information in publicity or a
newsletter
 having strong links with other local groups and organisations of minority
communities
 ensuring there are systems for individuals to feedback issues of concern
to different communities with suggestions for campaigns or activities
 monitoring who is involved in the organisation (staff, management
committee/board, volunteers and members/service users) and actively
using that information to address areas of under-representation
 having activities and discussions within the organisation which help to
define who ‘belongs’ – who is ‘us’ and who is ‘them’17
are all examples of ways in which the ULO can make itself relevant and
responsive to different communities. A number of ULOs have, for example,
identified the need to engage a greater number of younger people in decisionmaking structures and different areas of the organisation and have developed
on-going programmes to support young people to be more involved.18
31
It is important to operate on the basis that people involved in the organisation
will have complex social, personal and political identities. It has been suggested
that “Britain is not only more diverse than ever before but that diversity itself is
growing more diverse. Today, identities are more complex and fluid than they
used to be … there should be three wider aims for the future: recognise and
harness diversity, create equality and challenge discrimination”.19 A ULO which
understands that and applies principles of accessibility, inclusion and equality in
relation to all groups that experience oppression and discrimination will be more
likely to succeed in achieving diversity within the organisation. This can enable
people to avoid “them and us” language and approaches, which sees some
people as different and therefore as problems to be dealt with.20
A “Rights” Based Approach
The achievement of equality in society, full civil and human rights has long been
the aim of disabled people of all ages and backgrounds. In its Independent
Living Review, the government states that it is “committed to delivering on full
and equal citizenship for disabled people and sees independent living as being
part of the way we advance this. Independent living enables disabled people to
fulfil the roles and responsibilities of citizenship”.21 In order to do this, disabled
people, carers and others who use support will need information and advice to
identify and understand political, social, economic and personal rights. They
also need to know how to get support, when appropriate, to exercise those
rights.
The Department of Health’s policy paper on ULOs explains that “promoting
human and other rights is an important feature of ULOs. Examples of how it
might be done include supporting people to have their human rights met under
the Human Rights Act 1998, and working with people to exercise their rights as
citizens, e.g. through participating in democratic processes like voting in
elections, or enabling them to access services, benefits and community
resources”.22
Fairness, Equality, Dignity And Respect
“Human rights place authorities in the UK – including the government, hospitals
and social services – under an obligation to treat people with fairness, equality,
dignity and respect. Human rights are not just about the law. The Human
Rights Act influences the way public services are delivered. [It] says that
providers of public services, such as staff at residential homes, educational
bodies or hospitals ... must make sure that they do not breach people’s human
rights. The Human Rights Act works alongside the Disability Discrimination Act
and other laws to make sure that disabled people are treated with respect for
32
their human rights, particularly when receiving public services. The rights
contained in the Human Rights Act belong to everyone – it does not contain any
rights specifically for disabled people. However, the general principles in the
[Act] are relevant to several issues which many disabled people face. [It]
therefore provides an important tool for disabled people to use to challenge
discrimination and unacceptable treatment.”23
Some of the key areas of the Human Rights Act which have been successfully
used by disabled people include
 the right not to be tortured or treated in an inhuman or degrading way
 the right to respect for private and family life, home and correspondence
 the right to life.
A report from the British Institute of Human Rights includes 16 cases in which
the Act has been used to protect people’s rights. Examples include a disabled
man who challenged the decision that he could not have a support worker with
him in a gay pub, and a couple with learning difficulties who used the Act to
stop the use of CCTV cameras in their bedroom as a way of assessing their
parenting skills.24
As the Department of Health document quoted earlier states, citizenship and
rights is also about ULOs supporting people to get access to (local and
national) democratic processes. This includes voting in elections, taking on
public office or taking part in public consultations, particularly those affecting
local services and facilities. Involvement in the activities and decision-making
processes of the ULO itself will build confidence and skills for disabled people
(of all ages), carers and others who use support to participate in the wider
community should they wish to do so. Each ULO should be working to ensure
its constituency gets equal access to services, benefits and community
resources as a matter of right.
The Disability Discrimination Acts play a key role in enabling disabled people to
challenge discrimination in employment and access to goods and services, and
this will continue with the Equality Act 2010 which brings together existing antidiscrimination law.25 The law gives disabled people26 protection from
discrimination in applying for, getting and staying in work and in getting access
to ‘goods and services’ of all types.
33
Employers and service providers have duties to make ‘reasonable adjustments’
to ensure that disabled people are not unfairly disadvantaged. Such
adjustments can include changes to buildings and premises, and also covers
changes to practices, policies and what are called ‘auxiliary aids and services’.
Examples include providing induction (hearing) loops, information in accessible
formats, staff to assist people, provision of sign language interpreters or making
websites accessible for people who use screen-readers or other assistive
technology.27
ULOs should play a role in informing their constituency of their rights under
equality legislation, using the law as a lever when working with local employers
and service providers (from all sectors). They should play an integral role
locally contributing to Disability Equality Schemes and duties.
With Rights Come Responsibilities
Just as ULOs work with their constituents to promote the legal, civil and human
rights of those constituents, so ULOs may need to remind those involved with
the organisation about the responsibilities that go alongside those rights. As a
ULO develops a more diverse constituency, people within the organisation may
find themselves working alongside people from different communities and with
very different life experiences to their own. The ULO must ensure that there is
a shared understanding that each person has equal rights to be treated with
respect, courtesy and non-judgementally. As people engage with the
organisation and make their own contribution, so they should recognise the
right of others to do so too and not be an obstacle to the participation of others.
This may mean work with staff, Board members, volunteers and service users
to help them to acknowledge and take responsibility for possible prejudices,
values, beliefs or other things which may affect their attitudes to others. In
developing individual and collective knowledge of rights, those involved with the
organisation have a responsibility not to violate the rights of others. As
individuals develop confidence in relation to asserting their own rights, so they
can promote and champion the rights of others.
34
Meeting The Design Criteria 3: The Organisation’s Constituency
A number of the Department of Health’s design criteria for User-led
Organisations (ULOs) relate to the involvement of an organisation’s
‘constituents’ – its service users – who might be disabled people, carers or
others who use support. These are DC4, DC9, DC12, DC13, DC19 and DC20.
These are that a ULO:
 DC4. Is shaped and driven by the initiative and demand of the
organisation’s constituency
 DC9. Engages the organisation’s constituents in decision making
processes at every level of the organisation
 DC12. Has a minimum of seventy five per cent of the voting members on
the management board drawn from the constituency of the organisation
 DC13. Is able to demonstrate that the organisation’s constituents are
effectively supported to play and full and active role in key decisionmaking
 DC19. Is accountable to the organisation’s constituents and represent
their views at a local level
 DC20. Supports the participation of its constituents in designing,
delivering and monitoring the organisation’s services
The chapter ‘Essential Features of a User-led Organisation: The Department of
Health’s Design Criteria’ sets out and explains the 21 criteria in full.
This chapter considers some key areas that an organisation should consider in
its work towards meeting the design criteria relating to the involvement of its
constituents and contains a message powerfully conveyed by a developing
ULO: “If you do the same as you’ve always done, you’ll get the same results;
you will need to work in different ways to attract new people from different
communities, backgrounds, support needs or different ages.”28 The chapter
includes some guidance on initial steps, some principles around involving
service users – examples from other organisations of ‘thinking outside the box’
and considering new ways of carrying out some decision making activities,
ideas on training, mentoring and meeting people’s access needs.
35
Initial Steps
Once an organisation has taken the initial commitment (at management
committee or board level) to become a ULO, there are a number of steps which
it may need to take in the process of fully involving its service users at all levels
and in all areas of work, including decision making. These include:
 Mapping the current situation relating to representation of service users at
management committee or board level, amongst employed staff
(including representation at management level), amongst volunteers and
others involved with the organisation.
 Identifying the priority area(s) for action (where service users are least
represented) and develop an initial action plan to address the underrepresentation.
 Widely advertising to service users the organisation’s commitment to
increase the involvement of its constituents in the running and decision
making processes, and invite those interested in participation to come
forward. This will need to be done in a number of different ways, and
over a period of time, in order to contact and engage with people who are
less likely to respond.
 The initial action plan for moving to fuller involvement of service users
should be reviewed by those disabled people, carers and others who use
support as they will be able to contribute from their own experience and
develop the action plan.
 Carry out an audit of skills necessary at different levels of the organisation
to identify where support, training and mentoring might be needed to
equip service users to play a more effective role.
Involving Service Users
Developing the capacity of an organisation’s constituency to shape, develop
and influence the organisation’s activities and direction will take time and
commitment, particular where this is a new area of work for an organisation.
The transition to achieving 75% of voting members of the management
committee or board may take some time if the organisation needs to finds ways
to pass on the knowledge and expertise of those involved in the organisation
who are not representative of the constituency. This should be seen as a
positive process of empowerment for those disabled people, carers and others
using support who are taking on new roles within the organisation.
36
Just as – in the wider social and political context – ‘inclusion’ does not mean
simply the ‘integration’ of people into existing systems, so that is true in the
process of the development of people’s skills and confidence to take a greater
role in a ULO. In other words, it will necessary to challenge the way things
have been done in the past in the organisation and adapt some activities and
processes to suit the diversity of individuals involved.
It is accepted that there will always be a need for a degree of formality in some
decision making processes because of the legal requirements of operating an
organisation, but even these can be made more accessible and less
intimidating.
For example, meetings are not the only ways to contribute – other methods
need to be developed for those who are not able or motivated to attend or
participate in formal meetings. It is essential, however, for a ULO to show that
contributions made in settings other than traditional meetings have an equal
influence on the organisation’s management and direction.
Doing Things in New and Creative Ways
Doing things differently and more creatively may require inputting resources in
new ways – it may not necessarily require more resources, just thinking about
how to use existing resources in other ways to achieve the greater involvement
of disabled people, carers and others who use support.
The use of smaller sub-groups where proceedings can be less formal, more
participative, more workshop-style has been effective in some organisations.
These range from smaller, closely engaged face-to-face sub-groups to wider
email distribution groups for options appraisals and ‘lighter-touch
consultations’.29 Methods of engagement chosen by disabled people and
carers in some organisations have also included:
 Group meetings
 Telephone conversations
 By commenting on a website
 Email or online surveys
 Working 1:1 with an experienced mentor
 By minicom
 Working in a small group with an experienced mentor
 By fax
 In writing
 Using Instant Messenger software
 Utilising virtual groups in line with the Virtual CIL model30
37
To ensure that sub-group work is consistent with organisational policy and
objectives, having one member of the Board working with each group or having
a member of the sub-group co-opted onto the Board can be effective for
achieving this requirement.
The aim should be for the continuing development of the skills, knowledge and
confidence of people who wish to become more involved in different areas of
the organisation and its decision making structures. In some cases, this may
require a gradual, planned process of introducing people who have no
experience of involvement in organisations to the idea of meetings, terminology,
working as a group etc. – an informal induction process that takes place even
before ‘participation training’.31
Design criterion 20 talks about a ULO supporting the participation of its
constituents in designing, delivering and monitoring the organisation’s services.
This indicates that activities such as annual reviews or reports, setting
organisational goals or objectives and developing future action plans and
priorities, for example, should all actively involve the disabled people, carers
and others who use support who are part of the wider organisation.
Training
Different types of training should be considered as part of this process of
engaging effectively with the organisation’s constituency, including:
 Governance training for management committee members. Trustees or
Directors of an organisation must be knowledgeable about the key
governance issues involved in running their organisation, such as roles
and responsibilities, financial issues, etc. This sort of training and support
can be accessed through mainstream sources such as Councils for
Voluntary Services (CVS), and further information is given in the chapter
“Running a Sustainable Organisation: Sources of Training and Support”.
 Leadership training for management committee/board members and
management staff
 Equality and diversity training for management committee/board and staff
members. This should always be delivered by people who have direct
experience of the issues affecting particular sections of the community.
There are resources within this Support Pack outlining the training which
has been delivered to trustees, management staff and service users of
organisations which took part in the ULO Demonstrator Site pilot project
in early 2010.
 Mentoring training for individuals with different roles in the organisation
who have skills to coach and mentor others into new roles
38
 A variety of types of participation training for service users, concentrating
on the social model of disability, meeting and working-in-groups skills and
effective participating in decision-making processes
Mentoring, Coaching and Buddying
Mentoring or ‘buddying’, matching a new or less experienced person with
someone who has more experience (and has received appropriate training),
can be a highly successful method of developing skills (both of the mentee and
the mentor).
For some individuals the mentoring or buddying may only need to be short
term; for others it may be appropriate for them to have a longer term mentor or
buddy, for example where someone with learning difficulties or an intellectual
impairment has become a member of the management committee or board and
needs additional support to engage with some of the processes of decision
making.
Meeting People’s Access Needs
A key element of enabling people to effectively participate in organisations –
whether at board level, as members of staff, volunteers or service users – is
meeting their access needs. Different sections of the community will have
different needs and ‘access’ is used in a very wide sense, not just about ease of
using the built environment. Some examples may include:
 Communication support (such as a sign language interpreter or
palentypist).
 Information in different formats (such as large print, Braille, audio or easy
read).
 The need for regular breaks.
The chapter “Checklist for Organising Accessible Events” gives further
information on issues for consideration in order to meet a range of access
needs for different sections of the community. Disabled people who are
employees of the organisation can only perform their jobs effectively if their
access needs are met. Many disabled people may be entitled to support from
the JobCentrePlus’ Access to Work scheme, which may be able to meet
additional costs of equipment, adaptations to the workplace, support workers,
transport to work (or training and support for public transport use), among other
adjustments.32
39
Being an Ally
Disabled people acknowledge and value the support of non-disabled people
and carers in the move towards full human and civil rights and greater
participation in family and community life and society. The combined
knowledge, expertise and experience of disabled people, carers, others who
use support and non-disabled people are powerful tools for change.
One disabled champion of inclusion has powerfully described ‘How to be an
ally’:
“The truth is this:
We do need you - not to be ‘experts’ or managers of our lives, but to be friends,
enablers, and receivers of our gifts to you. We need you to
 admit cheerfully what you don’t know, without shame;
 ask us what we need before providing it;
 lend us your physical strength when appropriate;
 allow us to teach you necessary skills;
 champion our rights;
 remove any barriers previously set in place;
 return to us any power you may have over our lives.
We may also need you to remind us of our importance to the world and to each
other at times of tiredness and discouragement.
We can live without patronage, pity, and sentimentality, but we cannot live
without closeness, respect and co-operation from other people.
Above all, we need you to refuse to accept any ‘segregation’ of one group of
humans from another as anything else but an unacceptable loss for all
concerned.”33
In Conclusion...
For many organisations, the full engagement and involvement at all levels of
disabled people, carers and others who use support may require some
fundamental changes in thinking. “Organisations, of whatever type, share a
common condition. They are made up of individuals. People are complex, often
unpredictable and it can be difficult to direct behaviour. In effect organisations
don’t develop and change – people do. When people are asked to work in
different ways there can be little real change in external behaviour unless their
can change their thinking. They need to be able to look outwards and
inwards.”34
40
Meeting The Design Criteria 4: Carers, Networks, Partnerships
This chapter deals with two of the Department of Health’s design criteria (DC)
for User-led Organisations (ULOs) – DC8 says that ULOs should recognise
“that carers have their own needs and requirements as carers”. Secondly, DC6
says that ULOs modelled on Centres for Independent Living (CILs) should
cover “all local disabled people, carers and others who use support either
directly or via establishing links with other local organisations and networks”.35
This Support Pack is being used primarily by smaller ULOs. Together they are
part of that local network which covers a broad constituency and a wide range
of services. This chapter highlights some key issues for networking and
partnership, and outlines thinking about the involvement of carers in ULOs, all
of which should provide background information for ULOs.
Carers
The Department of Health recognises that for some disabled people’s
organisations, “the involvement of carers in ULOs is a contentious one. There is
a perception that, historically, disabled people and carers requiring resources
and support have been pitched against one another, with both groups feeling
that they have to compete to have their needs and entitlements met at the
expense of the other”.36
In addition, some disabled people and disabled people’s organisations have
tried to distance themselves from the language of ‘care’, whether that is familybased, unpaid, informal care or from professional, paid ‘carers’. In developing
the agenda of choice and control over their own support and who provides that,
they have developed preferred terminology (such as ‘support’, ‘personal
assistance’). Disabled people have also re-examined relationships with family
and friends without the complications of ‘burden’, ‘guilt’, ‘over-protection’ and
similar negative issues which can sometimes arise in the ‘carer’/’cared for’
arena.
The reality of ‘who is a carer?’ is of course far more complex as “many disabled
people are also carers and for some groups like older people, people with
learning disabilities and those from black and minority ethnic communities, the
split between ‘carer’ and being a disabled person or a person who uses support
is difficult to disentangle. Indeed some disabled people and other people who
use support would argue that carers are important allies. For people described
as having ‘profound’ and ‘complex’ needs carers have often played a key role in
advocating on behalf of the individual.”37
41
As the Department of Health policy document goes on to say, “It is important to
accept that disabled people and other people who use support often have
different issues than those faced by carers. However, they are not inherently
competitive by nature. There needs to be room within ULOs for different interest
groups to collaborate and work separately where necessary so that the
interests of all groups are accommodated without anyone feeling compromised.
The fact that someone is a carer does not preclude them from having a strong
commitment to independent living and the social model of disability. Some
important partnerships have been developed where disabled people and carers
have worked together on common areas of concern or interest, but also been
very clear about where the differences between them lie and work separately
on those areas.”38
The Needs Of Carers
Carers have their own needs in relation to peer support, advocacy, direct
payments, information, advice, user involvement, etc. The constituencies of
most ULOs will include carers (since, as mentioned above, disabled people of
all ages and others who use support may also be carers). In East Sussex,
Care for the Carers is the key source of information and organisation
specifically representing carers’ interests. Its aims are:
 to empower carers to be involved in decisions and making choices that
affect their lives
 to ensure that carers are recognised and valued
 to inform carers of their rights and help them to access the services and
support to which they are entitled
 to enable carers to acquire skills, knowledge and understanding of their
role as a carer
 to enable carers to access a good quality of life within and outside caring
(to include health and well-being, leisure, education and employment).
For other ULOs, if they have a broad constituency of people who identify as
carers, disabled people and other people who use support, then carers are
likely to be part of the decision-making process. Where an organisation
comprises different groups of people then all those groups have to sign up to
the values and characteristics that are set out in the ULO design criteria.
42
A Local Network of Organisations
In order to meet the Department of Health’s design criterion requiring covering
of all local disabled people, carers and other people who use support, ULOs will
need to look at forming positive alliances and links. A network of local ULOs
will be able to provide a variety of types of support for a wide range of people.
This network will be made up of organisations whose constituents identify
primarily as:
 Disabled people (with all types of impairment including people with
mobility impairments, people with brain injury, neuro-diversity etc.).
 Carers.
 Older people.
 Mental health system survivors.
 People with learning difficulties.
 Parents of disabled children.
 Deaf people.
 Blind and vision impaired people.
 Personal assistance users.
 Young disabled people.39
It is envisaged that the network of ULOs in the area would be connected
together by common aims, based on the 21 Department of Health design
criteria and therefore sharing similar values. As many smaller organisations in
East Sussex are impairment-specific in their focus, as ULOs they will need to
work actively, either individually or via local alliances or wider networks, to
establish working relationships and ensure the needs of different groups are
appropriately met.40
In order to ensure that the community is provided with appropriate support for
independent living, the services provided by ULOs should include services,
support and activities that are central to CILs, across the whole spectrum of
ULOs. By feeding into, and working with, a larger, local pan-impairment CIL,
the constellation of organisations can enrich and strengthen the services
available to local disabled people, carers and others who use support. It can
also ensure some specialisation, where appropriate. The combined services of
the network of ULOs should cover:
 Direct payments/individual budgets support service.
 Advice and information.
 Peer support and counselling.
 Disability equality training.
 Consultation and involvement (for example, work with public sector
organisations on their Disability Equality / Equality Duty, including
consumer audits).
 Housing support services.
43




Advocacy and self-advocacy.
Access audits.
Employment support projects.
Support to recruit and employ personal assistants (which may be
separate to direct payments/individual budget support).41
Technology allows for ULOs working together (whether or not a pan-impairment
CIL exists locally) to have a strong internet presence as a gateway to a ‘Virtual
CIL’42. Not all disabled people, carers and others who use support have access
to the internet, so it is vital for ULOs to continue to provide activities and
services in traditional ways. Some of the advantages of strengthening and
combining internet resources have been identified as:
 Information and resources being available 24 hours a day, 7 days a week.
 Information being available in a range of different formats, for example in
spoken podcast, or videocasts in British Sign Language.
 A single-entry point to all ULO services that enables a disabled person,
carer or someone else who uses support to build their own network of
information or support.
 An easily and cheaply updated reference point for service users and
organisations alike.
 Access to information and resources from almost any location.
 Providing ways that enables people to access peer support, including
reviewing services, sharing information and asking/answering questions.43
Principles For Working Together
Working as a network of ULOs looking to provide the best services and support
within the community, partnerships and alliances may, at times, need to be
more formal (such as when two or more ULOs put in a joint bid to provide
services). Partnership will require groups and organisations to maintain some
key principles such as,
 Accountability all work should be able to stand the test of scrutiny
by the public, the media, charity regulators, members,
stakeholders, funders, Parliament and the courts.
 Integrity and honesty (operating to the highest standards of
personal and professional integrity).
 Transparency (maintaining an atmosphere of openness and cooperation).
 Legal compliance (adherence to the law and charity regulations
and guidance).
 Commitment to equal opportunities and diversity issues.44
44
Meeting The Design Criteria 5: A Sustainable Organisation
Several of the Department of Health’s design criteria for User-led Organisations
working with disabled people, carers and others who use support (ULOs) relate
to running a sustainable organisation. These are:
 DC11. Is a legally constituted organisation.
 DC14. Has a clear management structure.
 DC15. Has robust and rigorous systems for running a sustainable
organisation (e.g. financial management/contingency planning).
 DC16. Is financially sustainable as there will be no ongoing central
government funding.
 DC17. Has paid employees, many of which must reflect the organisation’s
constituency.
The government’s “Life Chances” report is clear about disabled people being at
the heart of the initiatives put in place to achieve disabled people’s equality by
2025. One of the ways in which this vision should be achieved is through ULOs.
“The capacity within these organisations [Centres for Independent Living / Userled Organisations] should be increased to enable them to play an effective part
in supporting disabled people to achieve independent living” and “Local [ULOs]
will be a vital part of the implementation of a new approach to supporting
independent living. Funding for the services provided will come from Service
Level Agreements with health, social services, DWP and other agencies, and
from spot purchasing of services... “. 45
Sustainability
If ULOs are to be employers, be commissioned to provide services or take on
other activities like training or consultancy, they need to be legally constituted
organisations with appropriate infrastructures to undertake those (and other)
activities. ‘Sustainability’ – being a strong, effective organisation that has a
long-term future – is an important factor for any ULO which wishes to provide
consistent, reliable and high quality services to its constituents and attract
funding. The Board of Trustees or Management Committee should recognise
this in all its activities.
Some organisations, particularly those that are smaller or newly established,
may need help with various aspects of setting up, developing and running the
ULO, including (but not exclusively):
 advice on options for different types of organisational structure (charity,
community interest company, social enterprise etc.) and the legal
framework for operating
 constitutions, governance and leadership
 recruitment, training, management and retaining paid staff
45




systems for effective financial management
identifying sources of funding
working with volunteers
engaging with local networks and partnership initiatives, etc.
This chapter covers the main sources of such support for organisations in East
Sussex and some general on-line sources.
Councils for Voluntary Service
A key source of support for local voluntary (or ‘third’) sector organisations are
Councils for Voluntary Service (CVS). They “aim to enhance the quality of life
of people in their local area by promoting the principle and practice of voluntary
action by both individuals and organised groups and by supporting the
development of local initiatives to meet community needs, by:
 providing services that help voluntary and community groups operate
effectively and deliver quality services
 identifying local needs and working with communities and other agencies
to develop appropriate action
 developing effective networks and collaboration between organisations
and groups working within the community
 enabling voluntary and community sector views to be represented in an
effective and accountable way
 ensuring that the voluntary and community sector can work in strategic
partnerships with other sectors.”46
There are three Councils for Voluntary Service in East Sussex, which provide a
range of services to organisations. To be eligible to use CVS services, an
organisation must support the overall aims of CVS, and be a charitable, not-forprofit organisation with a written constitution and its own bank account. Support
can also be provided to new organisations to help them develop a constitution
and basic accounting procedures in order for them to fulfil the criteria for
membership of the CVS.
The CVS in East Sussex aim to provide a consistent service across the county,
but you do need to check with your local CVS what they can offer. All CVS in
East Sussex can be contacted by telephone, e-mail, via the website or in
person. Face-to-face meetings can be organised where appropriate. Contact
details for all local CVS are in the appendix.
46
Support on Governance and Management Structures
There are a number of different structures that a ULO could choose (for
example, a charity, social enterprise, limited company or Community Interest
Company)47. Whichever structure is chosen, the important factor is that the
organisation will be legally constituted, which reduces the liability of those
managing it. This is particularly important in relation to employment of staff and
contracts for services, as those who manage the organisation will be legally
responsible for those employees and the activities of the organisation. Boards
and management staff should be trained in the different aspects of running a
sustainable organisation, especially in legal and financial matters.
As well as help for new groups to get started, CVS can provide information,
advice and training (which is free as far as possible) to existing organisations
on organisational and financial management. Support includes help and
training around writing a constitution and skills needed to run a management
committee. ULOs should have a constitution that reflects key elements of the
Department of Health design criteria for ULOs. The CVS have a number of
standard constitutions which they can adapt and ULOs should ensure their
constitution includes commitment, for example, to the underpinning values of
the social model of disability, promoting independent living, being peer support
based and having a majority of the management committee drawn from the
constituency of the organisation.
CVS will also signpost to other sources of training from different providers.
Local Enterprise Agencies run training courses on employment law, financial
management and other areas related to running a sustainable business. The
chapter “Sources of Support for Organisations” provides contact details of local
Enterprise Agencies and other training providers.
Independent examination of accounts is also available for small groups, but if
an organisation’s accounts need to be audited, this must be carried out by a
qualified auditor of accounts. The local CVS will be able to provide information
on when this is necessary.
Support on Staffing the Organisation
ULOs need to employ disabled people as well as having them as volunteer
board or committee members. Although volunteers play an important role in
the operational activity of organisations, relying solely on volunteers can leave
an organisation vulnerable and will limit the opportunity to bid for contracts.
People will volunteer their time for a number of different reasons, for example to
gain work experience or to support a particular area of work that is important to
47
them. Of course, volunteers can ultimately choose whether or not to give their
time to the organisation and at times may have other commitments in their lives
to which they need to give a higher priority. If the organisation relies solely on
volunteers and those volunteers leave, they will take their expertise with them.
Volunteers should complement the services provided by paid staff, rather than
run the entire organisation.
Many organisations are totally reliant on volunteer support at the start, but
funding should be sought at an early stage to provide the finances to employ
paid staff. Having paid employees will be seen by funders and commissioners
of services as a means of continuity for the organisation. Organisations need to
be aware of employment legislation and the local Enterprise Agency can
provide information on sources of support in this area. Some of the on-line
resources in the final section of this chapter also provide relevant information.
Organisations that wish to take on volunteers can make use of the services of
their local Volunteer Bureau. All CVS have a volunteer bureau, which can
provide recruitment and referral of prospective volunteers to local organisations,
local promotion and advertising of volunteering opportunities and guidance on
good volunteer management and training.
For a ULO it is important to recruit volunteers from their constituency. The
volunteer bureau may not be aware of the importance of this issue, or of the
values that underpin ULOs, so when working with the local CVS or volunteer
bureau, it is vital to set out clearly the requirements for volunteers so that
appropriate volunteer placements can be made.
Support on Financial Sustainability
Uncertainty about funding is a key factor for many organisations so exit
strategies should be developed for when funding ends to identify whether
funding can be renewed, and if not, whether services can continue in the same
way without that funding in place. Limited or uncertain income is often a barrier
to the expansion and development of services. A good working relationship
with the local authority can help with securing ongoing funding, as can
developing positive partnerships with other ULOs to strengthen bids,
applications and tenders.
48
CVS can provide information on local and national funding sources and support
to apply for specific grants. The support provided is tailored to the needs of
each organisation. It will usually take the form of reviewing a funding application
form completed by somebody from the organisation to ensure that it meets the
specific criteria for the bid. Advice and training is also available to develop the
fundraising skills of organisations.
Some local funding sources are administered by the CVS, for which they will
provide the relevant application forms, normally available in standard print hard
copy, as well as in an electronic format such as PDF and/or Microsoft Word.
The aim is to make it possible to complete applications electronically, but the
accessibility of these forms in this format is not consistent, so you may need to
discuss this with the individual funding provider. Other sources of funding, or
tendering opportunities specific to ULOs of disabled people, carers and others
who use support may be advertised in specialist publications or on websites.48
Support with Representation and Liaison
Representation on local partnerships provides an opportunity to engage in
democratic processes and influence local policymakers. Community Networks
bring together voluntary and community organisations to enable them to be
represented on the Local Strategic Partnership and other key partnership
bodies. The CVS in each area oversee programmes of support, advice and
training for voluntary and community sector representatives involved in these
partnerships. Community Networks also organise a number of events during
each year, where Board members can bring issues forward to the
representatives. The networks provide a formal voice for the sector and feed
into SpeakUp, the county-wide voluntary and community sector
representational structure.
SpeakUp is a countywide forum which brings together people who each
represent a significant section of the voluntary and community sector in East
Sussex, for example, communities of place (e.g. Lewes District), communities
of interest (e.g. older people) and communities of identity (e.g. disabled
people).
49
The SpeakUp Forum aims to:
 Support groups to have a voice in the county and be a strong partner for
statutory agencies
 Provide representation and influence partnerships, planning and decisionmaking across East Sussex
 Strengthen networking between groups
 Develop good practice and training in the field of community
representation
The work of the SpeakUp Forum includes
 improving information for groups via the Ask CaSPer website:
www.askcasper.org.uk
 organising bi-monthly meetings for the SpeakUp representatives
 organising countywide networking events for groups
 improving the exchange of information between the networks using
newsletters and e-bulletins49
All events organised by the Community Networks and SpeakUp are free and
encourage voluntary and community sector organisations to network and share
experiences and good practice. Event organisers should always ask
participants about access needs, but may not know how some barriers to
participation can be removed. ULOs will need to be specific about access
needs, for example in relation to venues, information provision, communication
and the structure and conduct of events. Feedback to organisers about how
access needs were or were not met is useful for planning future events and
ensuring continuing improvements to inclusion.
ULOs need to ensure that all its constituents have the opportunity to get
involved in the kind of networking events described above. Some people will
need to develop the skills and confidence needed for such activities. Training
and support for this is available through East Sussex Disability Association’s
Participation and Engagement training programme, which was developed to
complement the work of the East Sussex Disabled People’s Participation
Group.
Information
All CVS publish, in standard print and on their websites, a directory of local
voluntary and community resources, where organisations can advertise their
services. A regular newsletter is published in each area, in standard print and
on the CVS websites, with other bulletins also available, normally sent out by email.
50
Community Interest Companies and Social Enterprises
The government’s national Business Link service has information on its main
website about setting up as a Community Interest Company
www.businesslink.gov.uk and there is specific regional support available from
www.businesslink.gov.uk/southeast/
Information on and for Community Interest Companies can be found at
http://www.cicregulator.gov.uk/ and information pack can be downloaded
http://www.cicregulator.gov.uk/CICleaflets/CIC%20INFORMATION%20PACK%
20V00.04%20Final.pdf
“Capacity Building” For Disabled People’s Ulos
Disability LIB provides individually tailored assistance to help disabled people’s
organisations become sustainable ULOs. It is an alliance of seven
organisations with expertise to support, mentor and coach other organisations
through the process of set up, development and/or expansion into or as a ULO.
It can provide funding as well as ongoing support, and has partnerships with
other organisations which can provide long-term sustainability and capacitybuilding support. For example, from March 2010, Disability LIB is working with
the charity Pilotlight. “Pilotlight brings together skilled professionals from the
private sector and harnesses their talents to help small to medium-sized
charities and social enterprises tackling disadvantage. Pilotlight provides a
uniquely managed capacity-building process that supports organisations in
exploring their vision and giving them the skills to make it happen.”50
Organisations can register online for a Capacity Building Assessment and use
toolkits and resources developed by the partner organisations.
Other Local Support
Longer established organisations in East Sussex which have been working in
the area of disability equality as User-led Organisations can also be a source of
support for newer or smaller organisations. East Sussex Disability Association
(ESDA), for example, has experience of the transition to becoming a ULO and
is a key local partner and source of expertise in this area.
51
Online Resources
Listed here are some other on-line resources and your local CVS can provide
links to more. Note that they provide ‘mainstream’ support, not specifically for
ULOs of disabled people, so they may not always demonstrate best practice in
accessibility and inclusion.
 National Council of Voluntary Organisations
 http://www.ncvo-vol.org.uk/advice-support
 Change Up programme website:
http://www.changeup.org.uk/overview/introduction.asp - not now being
updated, but containing useful information and links; the programme is
now run by
 CapacityBuilders
 http://capacitybuilders.org.uk/ - the government agency responsible for
improving the advice and support available to frontline voluntary sector
organisations.
 KnowHow Nonprofit
 http://www.knowhownonprofit.org/
 Improving Support http://www.improvingsupport.org.uk/about.aspx
provides a gateway to a wide range of tools and information
Meeting The Design Criteria 6: Improving Commissioning
The main criterion addressed in this chapter is DC21. This says that ULOS will
works with commissioners to improve commissioning and procurement. Other
criteria which are also relevant are:
 DC19. Is accountable to the organisation’s constituents and represents
their views at a local level.
 DC18. Identifies the diverse needs of the local population and contributes
to meeting those needs.
The Department of Health suggests that:
“ULOs can save money for public bodies by their involvement in preventative
work and through new ideas about the best way to provide support and
services for disabled people. It is important to build relationships with public
bodies, and also for disabled people, carers and other people who use support
to be involved in setting specifications for services or designing outcome
measures. Evaluation of services should not be based on activity levels, but
instead on outcomes”.51
52
This chapter is relevant for all ULOs, whether or not they are (or want to be)
involved in tendering to provide specific services. This is because it is
important for all ULOs, as part of their accountability to constituents and
representing their constituents’ views, to be involved in influencing
commissioning and procurement (purchasing) of services by the public sector.
For ULOs whose main functions are, for example, campaigning, peer support or
social activity rather than direct service provision, their input to improving the
commissioning of services can be vital. They will be able to tell commissioners
what people are actually saying about their lives so better services are
planned.52
This has been well described as ULOs playing a role in moving away from
“one-size-fits-all, impersonal, state-designed services for disabled people, [and
becoming] directly involved in developing and delivering services that disabled
people want and that embody the principles of independence and choice”.53
The Commissioning Context
The public sector has, over recent years, been shifting from a grants-based or
service-level agreement approach to funding local organisations, to one of
commissioning specific services. This means that they set out a specification
for the service that they want and invite organisations to submit proposals
which describe how they would deliver the service and how much it would cost.
User-led organisations which submit a tender to deliver a commissioned service
will need to provide good evidence that they are a well-managed organisation
which can deliver a quality service for the period of the agreement (generally
three years). This is likely to be a much higher standard of organisational
professionalism than is required to receive a grant.54
A variety of different support and care providers now work as partners with the
public sector. However, it is still a relatively new and developing area and it is
important that ULOs which are finely tuned to the needs and aspirations of their
constituents influence the commissioning environment. Commissioners within
the public sector will need the input of those who use services (or potential
service users) to help them think in new and creative ways when drawing up
specifications for services. The successful shift away from traditional models of
providing ‘care’ services and entrenched patterns of awarding contracts will not
happen without strong influence from disabled people, carers and others who
use services.
53
It is vital to focus on commissioning types of flexible support which deliver the
right outcome for service users – that is, a route to independent living, choice,
control over their lives and empowerment. This will deliver value across the
board, as it will result in less reliance or dependence on a range of other
services.
This is a great opportunity for, and challenge to, local ULOs. As one piece of
research suggests, “the potential for [ULOs] to be involved in designing rather
than delivering services also needs much closer consideration... [ULOs] could
play a significant role in helping to establish a genuine commissioning process,
based on the views and needs of individual disabled people. This is arguably
where [ULOs] can be of most value and could have greatest impact on the
equality agenda.”55
Influencing The Process
The drive to keep costs down (‘value for money’) has frequently resulted in
contracts being awarded to larger organisations that can operate ‘economies of
scale’ because they have standard practices and a larger infrastructure already
in place. It is vital, therefore, to show that value for money can still be obtained
through smaller ULOs by influencing what commissioners include in
specifications. There are a number of key areas which should be included in
specifications to ensure truly ‘person centred’ services. Many of these
determine the quality of the experience which service users have, and are often
the ‘added value’ which ULOs can uniquely bring, such as that the organisation:
 works locally with and for local people
 has specialist expertise
 has a track record of highlighting barriers which exist for many
marginalised groups and finding innovative ways of overcoming them
 can provide peer support
 has the ability to work with ‘hard-to-reach’ groups in involvement and
consultation activities (and in partnership with other ULOs can be even
more effective in this area).
In addition, ULOs often have particular experience in:
 working with people with a wide range of backgrounds, life experiences
and circumstances
 supporting individuals to take control
 peer support, advocacy and empowerment
 an holistic approach to supporting individuals
 creative thinking and the ability to find imaginative solutions to
overcoming barriers for disabled people, such as in employment, access
to information, access to services, housing and transport
 in-depth knowledge of relevant legislation and policy initiatives
54
 understanding of how to make information and communications
accessible.56
Supporting Ulos as Service Providers
It is worth remembering that there is considerable commitment to ensuring that
ULOs play a key role in the provision of local services. For example, in 2006 a
protocol agreed between NCIL and the Association of Directors of Social
Services states that:
“ADSS and NCIL continue to recommend to local authorities that they support
the development and expansion of local, user-led support services. We
strongly recommend that local authorities develop policies that foster a level
playing field for disabled people’s and carer’s organisations to compete in the
tendering process.”57
In East Sussex itself, the County Council’s Personalisation Bulletin says that ‘A
key priority for Adult Social Care is to increase the number of ULOs, which are
contributing to the transformation of social care and the introduction of personal
budgets’.58
The bulletin goes on to describe developments in support planning and
brokerage. “This will include working with individuals and organisations
interested in providing these services in partnership with care managers in
Adult Social Care. The key focus will be on:
 local, community-based solutions;
 promoting social inclusion and wellbeing; and
 user-led or person-centred approaches”.
Improving Tendering Practices
Tendering processes can be complex and difficult for smaller ULOs and are
often not accessible. Although commissioners in the public sector often have to
operate within formal and legal frameworks, they should still be looking at ways
to reduce any negative impact of these constraints on different groups in the
community (through, for example, Equality Impact Assessments and their
Equality Duties). ULOs working with commissioners should lobby for more
accessible tendering. Attention should be paid, for example, to ensuring that:
 timescales are realistic
 jargon is minimised and documentation is in plain language
 application processes are made more accessible (including having
documentation quickly available in various formats, with accompanying
guidance)
55
 that requirements for liability insurance are legitimate and proportional to
the service.
Accountability
For ULOs to be credible in their work improving and influencing commissioning
and procurement, they must be able to demonstrate accountability to the
constituency. Underlining the fact that an organisation is run and controlled by
people who represent its constituency, it also needs to have, for example,
 a variety of effective mechanisms for engagement with its
members/service users, in particular those whose voices are seldom
heard or whose contribution may have to be made in different ways
 methods of capturing and recording those views on a regular basis (which
may reduce the need for ‘one-off’, special consultation events)
 ways of communicating those views to relevant bodies, organisations or
individuals
 systems for feeding back to its constituency on progress of issues that
have been raised
 means whereby its constituency can feed into the decision-making
processes of the organisation
 procedures for the decision-makers in the organisation to communicate
with the organisation’s constituents.
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Section 4: Training
Disability Equality Training For User-Led Organisations
Commissioning Disability Equality Training
Disability equality training for disabled people should only be delivered by a
qualified disabled trainer who is trained in the social model of disability.
Organisations who do not have appropriately qualified trainers should
commission this training from an external trainer. East Sussex Disability
Association (ESDA) has a number of qualified trainers experienced in delivering
training to organisations wishing to develop as user-led organisations, and they
can be contacted to discuss your requirements.
What Is Disability Equality Training?
Disability equality training is under-pinned by the social model of disability and
therefore considers the barriers experienced by disabled people in society and
positively identifies what organisations can do to remove them. It includes
explanation and discussion on issues such as etiquette, customer care and use
of appropriate language to aid deeper understanding and engagement.
Management Board or staff members may have received disability equality or
disability awareness training in the past in the course of their day-to-day job.
Providing disability equality training in the context of user-led organisations will
assist with looking at the issues faced by disabled people wishing to become
involved in their specific organisation and finding solutions to removing those
barriers.
There are some key differences between disability equality and disability
awareness training.
What is Disability Awareness Training?
Disability awareness training is usually aimed at increasing the confidence of
non-disabled people providing services to disabled people and is delivered by
non-disabled people. The focus is usually on one impairment such as visual,
hearing or mobility impairments. Simulation exercises (such as wearing a
blindfold or sitting in a wheelchair) are usually involved, where the aim is to
provide participants with an idea of what having a particular impairment is like.
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Why Do Management Board and staff Members Need Disability Equality
Training?
In order to look at how an organisation can become user-led, Management
Boards and staff need to understand the basic issues faced by disabled people
on a day-to-day basis. This will enable them to understand how the practices
and procedures that they have in place may prevent disabled people from being
involved in their organisation.
Why Do Disabled Service Users Need Disability Equality Training?
Given that user-led organisations are those which are run and controlled by
disabled people, disabled people need to be given appropriate opportunities to
become involved in those organisations. They may, however, feel that they do
not have the appropriate skills to do this. Participation training is based on the
social model of disability. It encourages discussion on the issues that arise for
them as disabled people around participating in their organisations, and
enables them to gain the skills they need in order to play a full and effective
role.
Disability Equality Training And User-Led Organisations
Disability equality training is more effective and appropriate than disability
awareness training. Awareness training does not challenge assumptions and
attitudes, which is necessary to support a fully inclusive culture within
organisations. Concentrating on impairments rather than barriers may lead
participants to believe that disabled people are prevented from doing things by
impairment rather than lack of inclusive planning in society. Simulation
exercises do not provide a true reflection on the issues faced by disabled
people on a day-to-day basis as the experiences are forced and purely
temporary. They also encourage stereotypical assumptions.
An Example Course
Appendix 2 in this Support Pack contains a set of hand-outs used for a course
which was delivered to organisation’s Management Boards and service users
as part of the East Sussex ULO Demonstrator Site Project in 2009/10. These
hand-outs can be used in conjunction with other resources in this Support Pack
when commissioning similar training courses for your organisation.
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Section 5: Mentoring
Mentoring For User-Led Organisations
This chapter considers the role of mentoring relationships in terms of helping
organisations to develop as ULOs, as well as the role of a ULO champion to
keep the development work going. The role of mentoring or “buddying” is also
discussed in the chapter “Meeting the Design Criteria 3: The Organisation’s
Constituency”, in terms of disabled people supporting each other to be involved
in decision-making processes in their organisation. The chapter “Peer Support”
discusses how peer support operates, or might operate, in organisations.
What Is Mentoring?
The dictionary definition of a mentor is an “experienced and trusted advisor and
guide”. Mentoring is a partnership between two people (mentor and mentee),
normally working in a similar field or sharing similar experiences. It is a helpful
relationship based upon mutual trust and respect. A mentor is a guide who can
help the mentee to find the right direction and who can help them to develop
solutions to issues that they are facing. Mentoring can be part of formal
schemes or informal arrangements.
The Role Of Mentoring In Developing User-Led Organisations
As part of the government’s policy initiative to develop and support a ULO in all
localities,59 the Department of Health recently funded 13 Action and Learning
Sites to explore different means of building the capacity of ULOs. Several sites
operated under a mentor / mentee model, where a more established ULO
fostered the development of a ULO in an area where such an organisation did
not currently exist.60
The use of mentoring in this way is particularly useful in this context, as it allows
an organisation who has already been through the journey to develop as a ULO
to pass on their experience and knowledge of how they went about that
journey. They are able to share their experiences of what worked well for them
and what did not work so well. The sharing of good practice is also a key
benefit, as well as other useful contacts that they will have developed during
their journey to becoming a ULO.
59
There are a number of reports available from the National Centre for
Independent Living (NCIL) website, which describe the lessons learned from
each of the Action and Learning Site projects. However, as an example of the
type of mentoring support provided from a more experienced ULO to a
developing ULO, the report “Findings from the project between Choices and
Rights Disability Coalition (Hull – Mentor) and Independus (Richmond –
Mentee)”61 describes what worked well for the mentor and the mentee,
improvements that could have been made by both parties, and lessons learned
for each of the organisations involved.
In this project, Choices and Rights shared a lot of good information with
Independus, by providing a number of key documents (including their
constitution, trustee packs and a variety of key policies). They also provided
support around setting up of spreadsheets for Independus accounts at a crucial
stage of the project. Peer support for the Chair and some committee posts, as
well as key advice and support to trustees and volunteers of Independus, were
further areas of support. Choices and Rights were also able to ensure that key
people at Independus were kept motivated at all times.
Independus were keen to keep working in Richmond and in Hambleton. They
recognised that the local community saw themselves as 2 separate areas and
communities. Independus were determined to overcome this and show that
they could represent the whole community. The enthusiasm of the members
and trustees was good, despite the fact that setting up a new group from
scratch is not easy and that project timescales were an added pressure. Some
good partnerships were developed between Independus and both Choices and
Rights and Richmond Council for Voluntary Services. They knew what advice
and services they wanted to develop, and they enjoyed the ethos that Choices
and Rights had, which motivated them to keep on at difficult times. Mentees
had a good local knowledge of other organisations, services and the needs of
local disabled people. Independus recognised they needed skills training in
some areas
The East Sussex Ulo Demonstrator Site Project
In the East Sussex ULO Demonstrator Site project, participating organisations
received support from a disabled consultant from East Sussex Disability
Association (ESDA) to help them to develop as ULOs. The consultant also
mentored another disabled person, who worked alongside them whilst providing
this support. The aim of the mentoring programme was to provide disabled
people with work experience, which would improve their employment chances
and emotional and economic well-being, as well as to contribute to the
development of their knowledge of ULO best practice and support sustainability
after the end of the demonstrator site project. Some mentees worked with
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organisations they were already involved with, whilst others chose to work with
a different organisation. Those who were already involved with the organisation
had the benefit of knowing how it already worked and were able to contribute
their knowledge as a disabled person and one of the organisation’s
constituents. Those who chose to work with a different organisation were able
to find out how another organisation worked and to take their learning and
knowledge of ULO best practice back to their own organisation and use it to
support their future development. As well as being a key role in the
development of ULOs, the mentees were able to develop their own skills and
confidence around contributing to this kind of work.
As proved in the Action and Learning Site projects and the East Sussex ULO
Demonstrator Site project, both the mentoring and the mentored organisations
can learn a great deal from the experience of working in partnership in this way.
There will always be challenges during times of developments, and those
particularly relevant to developing ULOs are discussed in the chapter Becoming
a User-led Organisation: Common Hurdles Faced With Some Possible
Solutions to Overcome Them”. However, some useful issues for consideration
specifically around developing a mentor / mentee relationship are:
 Allow enough time for the work to be done and to enable good
relationships to be developed.
 Develop a timed action plan (to be agreed by both parties) of work to be
carried out.
 Be realistic about the amount of work that can be completed by each
party in the required timescale.
 Be honest if there is something that cannot be achieved – this is not a
failure; it may just mean things need to be done slightly differently.
 Develop a relationship with another organisation which is nearby, as this
will enable face-to-face meetings to take place more regularly than if the
mentor is further away.
 Establish the level of skills within the developing ULO at an early stage to
enable them to provide the most appropriate support.
 Set up and maintain good channels of communication between the two
organisations, and be clear about who is doing which task.
 Establish the preferred contact methods of both parties early on in the
relationship.
ULO Champions
The template resolution provided in this Support Pack asks organisations to
seek a ULO champion to work with their service users, stakeholders and
Management Board on fulfilling the ULO Design Criteria. A suggested ULO
champion role description is provided in Appendix 2.
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A ULO champion is someone who is committed to the ULO agenda and to the
idea of developing the organisation in this way. This person would be the key
link between the Management Board, the staff and the service users. They
should ideally be a disabled service user, and if they are not already a Board
member, should be co-opted for the entire time given to developing as a ULO,
or, preferably, be recruited as a permanent Trustee or Director.
The champion would lead on taking forward the organisation’s work to develop
as a ULO. Once the Board have signed up to the commitment of developing as
a ULO, this work needs to be kept on its agenda so that the momentum
continues. By being a Board member, the ULO champion can continually
report directly to the Trustees on the organisation’s progress.
In order that the ULO champion can lead on this work, they should be
supported by others in the organisation to carry out the role as necessary. This
means that they should receive any relevant skills training required to do the
job, as well as having their access needs met appropriately. Enough time must
be allowed for them to do the job, and they should be enabled to work with
other Board and staff members on tasks where appropriate.
Mentoring, Peer Support and ULO Champions
If a mentor has been engaged to work with a developing ULO, they could
provide a valuable means of support to the ULO champion. It would also be
useful for ULO champions to develop relationships and networks with people in
similar roles from other developing ULOs so that they provide each other with
peer support and share their experiences and good practice.
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Peer Support
This chapter provides a starting point for thinking about how peer support
operates, or might operate, in your organisation. Peer support is about people
who use services (disabled people, carers and others who may not define
themselves as disabled people but who use support) working alongside other
service users.
The key aim of peer support is for people with an insight to support people to
help themselves. People who have ‘gone through the journey’ are often in the
strongest position to be an ally to other people who are starting out. This
shared experience is central to the success of peer support and its value
cannot be stressed too highly. The peer support relationship may be about the
experience of using the services of your organisation, or the broader
experience of using other services.
Sometimes the two parties to a peer support relationship have equal levels of
experience and the support / supported input is fairly evenly balanced. More
often, though, one person has more understanding or insight and provides
more support – at least at the outset, though if the peer support relationship
continues this may change.
Wider Benefits of Facilitating Peer Support
Peer support frequently results in the person who is providing that support
developing more skills, confidence and expertise as they acquire new ways of
problem solving, improve their communication skills and gain greater
knowledge of, for example, resources and information which exist. This
personal development can be positive not only for the individual, but also for the
organisation as more people develop the skills, confidence and expertise to
increase their involvement in the organisation (if this is what they choose to do).
Frequently the peer support relationship enables service users to develop self
advocacy skills so that they are better able to speak up for themselves.
Peer mentoring, coaching or buddying can also be a means of continuing to
use the greater experience of one individual to support another person’s
personal development, knowledge (for example, of the organisation) and skills.
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Peer Support Provides (among much else) a Chance...
 for people to develop and share positive strategies as service users
 for people further into the ‘journey’ to offer the learning and experience
they have acquired to others in similar situations (for them to adapt what
is appropriate to them)
 to bounce ideas off another person
 to develop creative, problem-solving approaches
 for the personal development of both parties.
Peer Support is Not...
 an opportunity for people to ‘wallow’ in shared negative experiences
 a chance to have a long moan, become bogged down with problems and
get overwhelmed
 a relationship where one person tells another how they should do things
 about someone sorting out another person’s life
 designed to create dependence (or co-dependence).
What The ULO Can Do To Facilitate Peer Support
 Talk to service users, volunteers and members of the organisation about
the idea of peer support and how they would like to see it operate formally
within the ULO.
 With those constituents, draw up a simple set of guidelines so that people
understand what peer support is and what it is not, and what both parties
can expect from each other.
 Provide regular training or coaching for people who are interested in
taking part in peer support, peer advocacy and self advocacy, and
continuing training those who are already involved.
 Provide support or ‘supervision’ for those who are in the main supporting
role in peer support partnerships, either one-to-one or an action learning
set of others involved in peer support (or both).
 Encourage peer support partnerships regularly to reflect on what they
have learned from working together (this might be practical or factual
learning, for example, about new contacts in other organisations, where to
go for advice and help on particular issues. It will also be about reflecting
on personal development, increasing skills and expertise).
Have ways of capturing and recording this learning from peer support
partnerships so that it can be shared more widely in the organisation, and can
inform training or support needs analyses or service development issues.
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Section 6: Challenges For Developing User-Led
Organisations
Becoming a User-Led Organisation: Common Hurdles Faced
with Some Possible Solutions to Overcome Them
This chapter contains some hurdles which have arisen for organisations
participating in the East Sussex ULO Demonstrator Site project, but which are
common to organisations developing as ULOS. In the table below, the lefthand column describes the challenge, with the right-hand column describing the
possible solution(s) to that challenge.
1. Lack Of Knowledge
Challenge: Lack of very basic knowledge of accessibility issues, of disabled
people and of current issues relating to disability makes the idea of becoming
user led hard to accept.
Solutions:
 Disability Equality Training for Boards, staff and users is an essential
element of supporting organisations to become user led and sufficient
time to deliver this at the outset of support needs to be built into
planning.
 This support pack is a resource with background information and the
practical application of the social model to overcome barriers to
accessibility; organisations should be encouraged to make use of it
2. It’s Not Possible To Have 75%
Challenge: Organisations and/or their board members, particularly those of
long standing and with a traditional culture may react defensively to the ULO
criteria to have 75% of stakeholders on boards. This may be based on a short
term view, lack of understanding of the social model of disability and the
associated low expectations of what disabled people can achieve, together with
fear of loss of status and control.
Solutions:
 Organisations need to be aware that this criteria may take some time to
fulfil but still have the commitment to it within their strategy and planning
documents
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 Reviewing the recruitment processes for board members is part of the
commitment towards becoming user led, this process should be free of
any barriers to access
 This support pack is a vital resource, being firmly based on the social
model and the view that disabled people are equal citizens with human
rights; in addition, training sessions in the social model, diversity and
accessibility issues and in participation/engagement should be regularly
available via either the CVS or other organisations
 Support for the users of organisations who wish to become more
involved and part of decision making processes can be encouraged by
e-group, mentee and peer support
3. Invisible Hurdles
Resistance towards becoming user led may be expressed in subtle ways, which
can result in “invisible hurdles”, that may be more difficult to overcome. At times
there may be an implicit acceptance by board members, service users and staff
of “that’s just how it is”. Some people express resistance to change as external
to their own organisation so not something they could challenge. Examples of
quotes from baseline assessments and meetings with users, staff and trustees
follow here, with suggested responses.
Challenge: “They never listen to us, we are just tokens” (user forum member)
Solution: As well as training board members in the social model and
accessibility issues, training for forum members on assertiveness, effective
meetings and participation can help strengthen the voice of the users.
Challenge: “This is a political thing isn’t it?” (board member)
Solution: There is a national and local government commitment to equality and
human rights for disabled people, which has been in progress for many years
now and this work is part of that progress. Disabled people themselves, both
those born with an impairment and those acquiring them have been very
involved in this; one in five people are disabled.
Challenge: “I’m concerned about the 75%, we need certain skills on the board”
(board member)
Solution: The important thing is to ensure that there are no barriers to disabled
people wishing to become board members (or who are members and become
disabled); they should not be assumed to lack the skills required simply
because they are disabled; organisations could look at providing support,
training and mentoring to equip service users to become Trustees or Directors
66
or where service users wish to become Trustees or Directors but do not have
all the skills needed, a more experienced board member could mentor or buddy
a less experienced member.
Challenge: “The user forum we had was just a moaning session” (mentee)
All new groups need to be able to go through the full “storming, norming,
performing” stages. People with longstanding issues need to be listened to and
to learn how to present them assertively and calmly before being expected to
discuss them objectively and come up with positive ideas to address them
Challenge: “they give us the money, we have to do the job, client’s not part of
further meetings” (staff member)
Solution: User led organisations can help to involve “clients” in service
processes and work with commissioners to create more inclusive and
accessible service provision.
Challenge: “it is often left to people who are comfortable with committee
meetings” (chief executive)
Solution: User led organisations need to look at a range of ways to involve
their users, which may mean carrying out a range of different activities to
enable service users to input ideas or provide feedback, rather than
conventional meetings. See the support pack for a range of engagement
methods.
Challenge: “aware that this support falls short, e.g. events may be held in
inaccessible venues, or communication support needs may be difficult to meet.
Where a service user’s needs are primarily disability-related, would signpost
them to a local disability organisation as appropriate” (board member)
Solution: Organisations need to ensure their processes and practices are fully
accessible, whether they are seeking to become user led or not; see the
support pack for further information to help with this.
Challenge: “A members’ forum has been set up to enable service users to
have a say and to put forward suggestions on how they would like the
organisation to develop etc. The forum is chaired jointly by the two service
users who sit on the Board of Trustees plus one other service user, and
suggestions are fed up to the Board of Trustees through these two members.”
(chief executive)
Solution: This is a good starting point and needs to be recognised as such
while not allowing it to be seen as the same as being user led. Users need to
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be able to influence the organisation’s development by being fully involved in
decision making.
Challenge: “Although the organisation may not be able to be staffed by people
with complex needs there is a wish to respond to service users’ needs and
requirements” (chief executive)
Solution: It is important not to make assumptions about people’s capacity for
work; taking a social model approach and removing barriers will help to avoid
this and being aware of access to work and employment legislation is important
too.
Challenge: “Volunteers are involved in fund-raising and delivering other
services. Views are sought from everyone as the organisation is very open”
(staff member)
Solution: Seeking views is important of course but unless action is taken, or
clear and reasonable reasons for not taking action is fed back, the process of
being asked for views but not seeing results can demotivate people.
Challenge: “There is a feeling that able-bodied people should not be disabled
by the disabled people’s movement – they are trying to do their best, some
have experience in a medical field and want to promote independence and
awareness” (board member)
Solution: Non-disabled people can be valuable allies and many of them
working with disabled people do want to “promote independence and
awareness” but independent living principles as in Putting People First means
the disabled person should have choice and control over whatever is required
in order to go about their daily life. Non-disabled people need to support this in
organisational systems and strategies as well as in one to one support.
Challenge: “The organisation has nine Directors, and two of these are service
users. This equals 22%. Only Board members can vote at AGMs – day centre
members do not have voting rights. It is felt that the Board of Trustees is
responsible for running the organisation and its financial responsibilities. When
new Trustees need to be recruited, the organisation looks for particular skill
areas which may not be present amongst service users.” (chief executive)
Solution: It is important to ensure that there are no barriers to disabled people
wishing to become board members (or who are members and become
disabled); they should not be assumed to lack the skills required simply
because they are disabled; organisations could look at providing support,
training and mentoring to equip service users to become Trustees or Directors
or where service users wish to become Trustees or Directors but do not have
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all the skills needed, a more experienced board member could mentor or buddy
a less experienced member.
Challenge: “The user representatives on the Board need to feel that they have
equal status with other Board members. The forum would like more of them to
be on the Board. Five users out of 11 present made it known they would like to
be on the Board” (mentee)
Solution: As above – if this number of users wish to be board members, if no
negative assumptions about their capacity were made and they were trained,
supported and recruited as appropriate, this organisation could make significant
progress towards becoming user led.
Challenge: “But it’s hard ………to change and take responsibility and control
for oneself as so used to being told what to do” (forum member)
Solution: Support from mentees and champions and the organisation’s
commitment at all levels to becoming user led, together with participation and
engagement training can support disabled people to overcome this hurdle;
joining a local reference or participation group or partnership board for disabled
people can be a useful way to challenge traditional segregation, isolation and
passivity.
Challenge: ”able-bodied people don’t want to feel they are excluded from
everything…………….we are not going to be excluded from this service
delivery……….happy to be “working together but not to be excluded” (chief
executive)
Solution: It is not about excluding non-disabled people, who still have an
important role to play as supporters and enablers, but this role should not
involve decision making power about what people wish to do with their lives but
focus on supporting disabled people to achieve what they choose to do.
Challenge: “invites feedback from its service users, it does not currently involve
them in decision-making processes. The organisation is made up entirely of
volunteers, so they do not currently have the resources to do this to the level
they would like” (board member)
Solution: There is useful information in the support pack to help organisations
to become sustainable and robust and directs them to sources of advice,
funding etc.
Challenge: “The views of the user group are discussed at Trustee meetings”
(chief executive)
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Solution: Seeking views is important but unless action is taken, or clear and
reasonable reasons for not taking action is fed back, the process of being
asked for views but not seeing results can demotivate people. User groups
need to have member(s) who are also Trustees so they are part of the decision
making related to these views.
Challenge: “ the group was supposed to represent all of the organisation’s
service streams, it only represented people who used the Centre one day a
week, ….clients……….making lots of complaints rather than any forward
thinking about where the organisation was developing”(staff member)
Solution: All new groups need to be able to go through the full “storming,
norming, performing” stages. People with longstanding issues need to be
listened to and to learn how to present them assertively and calmly before
being expected to discuss and come up with positive ideas to address them.
Challenge: “The organisation’s new Chair has agreed that having a trustee with
{a specific impairment} is essential” (chief executive)
Solution: One trustee from the users where there has never been one is a big
step but not sufficient to meet the criteria to be user led; opening up recruitment
to all users is important to avoid the charge of tokenism.
Challenge: “Many of them probably do not have a mindset of people with {a
specific impairment} being able to be involved as Trustees” (chief executive).
Board members and staff of organisations need to understand the social model
and to “unlearn” their views about the capacity of disabled people.
Conclusion
The support pack offers valuable information and support to overcome most
hurdles; organisations committed to becoming user led need to make good use
of it, as do the mentees and user led champions. The lead organisation in the
area has a continuing supportive role to play and should be ready to respond to
queries and requests for further information and support.
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Appendix 1: Background Supporting Information
User-Led Organisations – Key Definitions
Advocacy
This means working with a disabled person, carer or other person who uses
support to get their views across, representing their interests, supporting them
to access services and/or other entitlements and secure their rights. In the
context of the personalisation of social care, advocacy is generally taken to
mean independent one-to-one advocacy and this is likely to be provided by
someone in a paid, professional capacity (and that advocate may also happen
to be a disabled person, carer or other person who uses support).62
Carer
In this Support Pack, this refers to people who provide unpaid care or support
to a relative, partner, friend or neighbour who is a disabled person or a person
who needs or uses support services. It does not include people who work as
volunteers (for example, people who do voluntary work through a charity,
organisation or Volunteer Centre), nor does it include those who are paid
wages to do this work. It is also important to remember that some people who
use services are also ‘carers’. For example, many people with learning
difficulties support their ageing parents. Carers can also be ‘service users’ in
their own right and this is formally recognised by, for example, carers having
rights to a ‘needs assessment’ by Adult Social Care departments. Many
disabled people and others who use support apply different words to describe
paid ‘carers’, such as Personal Assistants or Support Workers.
Centres for Independent/Inclusive Living
A Centre for Independent or Inclusive Living (CIL) is a social model based, panimpairment organisation, controlled by, and accountable to, disabled people in
its community. A CIL supports disabled people to live independently and
achieve full participation in society through such activities as peer support,
campaigning and providing user-led services. It is often described as a
‘grassroots’ organisation63, i.e. one that has grown out of disabled people in the
community.
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A CIL can be seen as having four elements64:
 Peer Support - The basis of a CIL is disabled people coming together to
support each other. Their shared experience will define ‘independent
living’ or ’inclusive living’ and identify barriers to this objective. This
collective understanding will form a CIL’s aims and strategy. This process
can be encouraged by non-disabled supporters or allies, but a CIL cannot
be run by them.
 Disabled people’s control - This means that all policy decisions under
an organisation’s governing document (its Constitution) are taken by an
elected body with a majority of disabled members. The organisation
should be accountable to its constituents.
 A social model understanding of disability - The ‘social model’ of
disability underpins the work of the CIL (i.e. that impairment is not the
‘problem’, but the barriers which exist in society create the problem for
disabled people). The organisation should be able to demonstrate the
practical application in its work of this underlying, stated principle.
 An integrated view of support needs - It is not necessary for a CIL
always to run a comprehensive range of services, but it should be a ‘one
stop shop’ for access to whatever support people need. In doing this, it
recognises that a holistic view of support needs must be applied.
A CIL may typically provide some or all of the following services:
 advice and information
 advocacy and peer support
 assistance with self assessment
 assistance with recruiting and employing Personal Assistants (PAs)
 a payroll service for PA users
 a register of PAs
 training of PAs
 projects encouraging take-up of direct payments/individual budgets
amongst marginalised groups
 disability equality training
 consumer audits of services and/or access audits
 information and advocacy services on welfare benefits
 impartial advice and a ‘try-before-you-buy’ service for technical aids and
equipment.
In some areas a CIL may not be one organisation based in one location. A
range of different models have been identified including a network (federation
or formal partnerships) of smaller ULOs together covering the comprehensive
range of activities and services described above, or a ‘virtual’ CIL which has a
internet-based gateway signposting people to various sources of support and
services. 65
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Constituents/Constituency
This is the group or individuals that an organisation represents or is set up to
work with.
Disability
Disability is defined in the government’s “Improving Life Chances” document66
as the “disadvantage experienced by an individual… resulting from barriers to
independent living or educational, employment or other opportunities… that
impact on people with impairments and/or ill health.”
“A clear distinction needs to be made between disability, impairment and illhealth. Impairments are long-term characteristics of an individual that affect
their functioning and/or appearance. Ill health is the short-term or long-term
consequence of disease or sickness. Many people who have an impairment or
ill health would not consider themselves to be disabled.”67
The term ‘disabled people’ is used to refer to people – of any age – with
physical and/or sensory impairments, mental health support needs, learning
disabilities, frailty and/or long-term health conditions who experience disabling
barriers of unequal access and/or negative attitudes. The term therefore
implies people who are disabled by barriers (rather than impairment).
Inclusive Living
This means being fully included with resources to enable the individual (or
group) to participate in, and contribute to, society to the level they wish.
Inclusion requires organisations, or wider society, to adapt by identifying and
removing barriers to participation. Inclusion is different to ‘integration’ which
suggests that a person, with perhaps some adaptations and resources, can fit
into pre-existing structures, attitudes and an unaltered environment.68
Independent Living
This is defined by the (former) Disability Rights Commission as “all disabled
people having the same choice, control and freedom as any other citizen – at
home, at work, and as members of the community. This does not necessarily
mean disabled people 'doing everything for themselves', but it does mean that
any practical assistance people need should be based on their own choices
and aspirations.”69
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It has also been explained as “enabling disabled people to fulfil the roles and
responsibilities of citizenship.”70
The recognition that all people are inter-dependent, and a desire to ensure that
‘independence’ is not interpreted just as disabled people being able to do
everything themselves, has led to more emphasis on the term ‘inclusive’ living.
Choice and control over who (and what) provides support for daily living is key
to both ‘independent’ and ‘inclusive’ living.
Other People Who Use Support
This is a term frequently used to refer to those who may not describe
themselves as a disabled person (for example, older people, deaf/Deaf people)
but who do experience barriers, and who need support to exercise choice and
control in their daily lives.
Peer Support
This is where disabled people, carers and other people who use support come
together to assist and/or provide a service to other disabled people, carers and
other people who use support. The shared experience of similar backgrounds
or circumstances ensures that peer support is built on the value of personal
experience.
Service User(s)
This refers to people who need specific support and/or equipment, usually
provided by health or social care agencies, in order to go about their daily lives.
Some groups of service users share a collective experience and identity in
terms of their history, experience of discrimination and accessing and/or using
welfare resources. These resources may sometimes be delivered as part of the
welfare state or the welfare state may signpost to, and/or assess people for,
resources provided by the private or voluntary sector.
The Social Model of Disability
This approach says that the ‘problem’ of disability is not someone’s impairment,
illness, frailty, condition or learning disability but, rather, any ‘problem’ which
exists is that they experience attitudinal, environmental and/or institutional
barriers that disable them. They may not have the support, equipment or
housing they need and may not have choice and control over their daily lives.
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The social model therefore describes the fact that people are disabled by
barriers (which can be dismantled) rather than impairment.
The approach was initially developed by people with physical impairments, but
it is just as relevant to people with learning disabilities, older people, people
with sensory impairments and people with mental health support needs.
However, not everyone in these groups may necessarily identify themselves as
being ‘disabled’ as this terminology has had negative connotations in the past
for many people.
It is also a model which is helpful for describing many of the barriers
experienced by other marginalised groups or individuals who face
discrimination and prejudice, for example, people from Black and minority
ethnic communities, people from the gay, lesbian, bi-sexual and transgender
communities among others.
User-Led
This term means that people from the constituency of an organisation take the
majority role in managing the organisation, deciding on its priorities and how
they should be addressed. DC12 of the Department of Health Design Criteria
for ULOs specify that there is “a minimum of 75 per cent of the voting members
on the management board drawn from the organisation’s constituency”. For
some organisations there will be a transitional period when they are working
towards this target.
User-Led Organisations (Ulos)
A ULO is one where people who come from the group or groups which the
organisation is designed to serve (its ‘constituency’) take the majority role in
managing the organisation, deciding on its priorities and how they should be
addressed. In the context of this Support Pack, the constituency might be
disabled people, carers and/or others who use support (and it is important to
remember that some people may identify with more than one of these groups).
These organisations meet the design criteria set out in the Department of
Health’s User-led Organisations (ULO) policy71. In the context of this Support
Pack, some organisations will be in a transitional period working towards
meeting these design criteria.
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User-Led Organisations: Governance Structures
This chapter looks at the different ways in which a ULO can be formally set up.
The different structures are:
 A Community Interest Company
 A Social Enterprise
 A Registered Charity
 A Company Limited by Guarantee
 A Charitable Incorporated Organisation
What is a Community Interest Company (CIC)?
A CIC is a new type of company, designed for social enterprises that want to
use their profits and assets for the public good. CICs are easy to set up, with all
the flexibility and certainty of the company form, but with some special features
to ensure they are working for the benefit of the community.
What is a Social Enterprise?
A social enterprise is a business with primarily social objectives whose
surpluses are principally reinvested for that purpose in the business or in the
community, rather than being driven by the need to maximise profit for
shareholders and owners.
Social enterprises tackle a wide range of social and environmental issues and
operate in all parts of the economy. By using business solutions to achieve
public good, the Government believes that social enterprises have a distinct
and valuable role to play in helping create a strong, sustainable and socially
inclusive economy.
What is a Registered Charity?
A charity is a particular type of voluntary organisation – one that takes a
distinctive legal form and has a special tax status. Some user led, disabled
people’s organisations have deliberately chosen not to become charities in
order to reinforce the idea that disabled people’s issues are about equality of
civil and human rights rather than issues of charity.
Charities can be organised in a number of different ways – they can be an
unincorporated association, a trust or a company limited by guarantee. Each of
these has a different governance structure – for example, a charity that is
formed as a registered company will be governed by a board of directors, a
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charity that is set-up as a trust will be governed by a board of trustees. Every
charity has to have a governing document that sets out the charity's objects and
how it is to be administered.
To register as a charity, an organisation must have purposes that are defined
under law as charitable. These include the relief of financial hardship, the
advancement of education, the advancement of religion and other purposes
that benefit the community.
Once registered, charities have to obey a number of rules, which include
regulations covering trustees, accounts, finances and management. Those that
are registered as companies have to comply with company law too. A
registered charity is not allowed to have political objectives or take part in
political lobbying other than in a generally educational sense.
Charities:
 are set up for a charitable purpose
 are not profit-making – so any surplus they may make must be used only
to further the organisation's purposes
 are independent – that is, they are not a part of any Government
department, local authority or other statutory bodies.
What is a Company Limited By Guarantee?
Companies limited by guarantee are private limited companies where the
liability of the members is limited. A guarantee company does not have a
share capital, but has members who are guarantors instead of shareholders.
Limitation of liability takes the form of a guarantee from its members to pay a
nominal sum in the event of the company being wound up while they are a
member or within one year of their ceasing to be a member. The amount of
money that is guaranteed can be as little as £1 and will be stated within the
constitution of the company (the Memorandum & Articles of Association).
Charities Act 2006: Comes Into Effect During 2010
Charitable Incorporated Organisation
The Charities Act includes in schedule 7 details of the new legal structure of
charitable incorporated organisation. The CIO is will be an option available
for charities from some time in 2010.
The purpose of the CIO was to create a structure with charitable status that has
the advantages of legal personality and limited liability, without the burdens of
company law and the confusions of dual registration with — and dual
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accountability to — the Charity Commission and Companies House. However,
it is not yet clear whether this will be simpler to operate. The standard advice
remains that an unincorporated charity that needs the advantages of
incorporation should look at becoming a charitable company now, rather than
waiting for the CIO to become available.
Promoting Independent Living
This chapter outlines current ideas about what is ‘independent living’, looks at
some of the principles behind it and the role of User-led Organisations (ULOs)
in promoting independent living.
What is “Independent Living”?
Central to the aims of any ULO should be promoting and supporting
independent living for disabled people and others who use support services.
The concept of ‘independence’ has developed significantly in recent years – it
does not mean an individual doing everything for themselves, or living alone, for
example. Rather, it is about the disabled person being able to take the lead
role in choosing how their needs are met in all key aspects of daily life. It is
about having the same choices, freedom, dignity and control as non-disabled
people in order to participate in, and contribute to, family, community and
society.
One useful definition, now adopted by the Government, suggests that
independent living is about “all disabled people having the same choice, control
and freedom as any other citizen – at home, at work, and as members of the
community. This does not necessarily mean disabled people 'doing everything
for themselves', but it does mean that any practical assistance people need
should be based on their own choices and aspirations.”72
In a consultation exercise for the Office for Disability Issues (ODI) review of the
Government’s independent living strategy, disabled people and others who use
services were asked what they understood independent living to mean. Their
responses were:
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What Does Independent Living Mean to Disabled People?
 Choice and control
 Choice about where I live
 Being included
 Choice about who I live with
 Participating
 Choosing who supports me
 Having equal access
 Choosing how my needs are met
 Freedom
 Being able to take risks
 Being ‘ordinary’
 Being respected and having rights
 Self-directed support
 Being in control
 Having a voice
 Being an equal citizen73
Baroness Jane Campbell, a pioneer of independent living for disabled people,
who chaired the expert panel for the ODI’s review, sums this up:
“Independent living means that disabled people have access to the same life
opportunities and the same choices in every day life that their non-disabled
brothers and sisters, neighbours and friends take for granted. That includes
growing up in their families, being educated in the local neighbourhood school,
using the same public transport, getting employment that is in line with their
education and skills, having equal access to the same public goods and
services. Most importantly, just like everyone else, disabled people need to be
in charge of their own lives, need to think and speak for themselves without
interference from others.”
Twelve Needs
It is recognised that giving disabled people greater choice and control over the
support they need and the resources available to them is important, not just in
social care, but across all mainstream services as well.74 Twelve key needs
which are central to independent living, and which take this holistic view, have
been identified as:
 Information
 Counselling and peer support
 Housing
 Technical aids and equipment
 Personal assistance
79







Transport
Access to the built environment.
Inclusive education and training
Adequate income
Equal opportunities for employment
Advocacy
Appropriate health care provision75
It is vital, in promoting independent living, to address these needs in ways
which are appropriate to the individual. It is essential to take account of other
aspects of their lifestyle preferences, the diversity of their personal and social
identity, such as age, gender, sexual orientation, race, belief, cultural and
religious background.
Promoting Independent Living
As the Government’s report ‘Improving the Life Chances of Disabled People’
points out, historically, disabled people have been treated as being dependent
and in need of ‘care’, rather than being recognised as full citizens. This has
meant that:
 responses to needs have often created dependency, rather than
promoting independence and extending opportunity; and
 disabled people have been expected to fit into services, rather than
services being personalised to respond to individual need.76
 The current focus is therefore on ensuring that services and support are
flexible enough to achieve the outcomes required by each individual,
rather than fitting the person into existing, pre-determined services. ULOs
can be key to supporting people to identify, and achieve, the outcomes
they want.
The Role of Ulos in Promoting Independent Living
Whatever the nature of the organisation – providing services, social activity or
campaigning, for example – the emphasis on its constituency shaping activities
requires ULOs to be responsive and creative.
Some important principles to which ULOs need to adhere in order to promote
independent living are:
 to recognise that all people should be treated equally - yet still as
individuals. This means recognising and valuing their differences and
respecting their individual beliefs, wants and needs. Treating people
equally does not mean treating everyone the same.
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 To support people to promote their right to achieve independent living by
encouraging them to exercise their freedom of choice. To allow them to
speak up for themselves and make their own decisions.
 To provide opportunities for the organisation’s constituents to be involved
in shaping and delivering the services being provided for them. This will
give added value because, as well as having local knowledge and
networks, they have the ability to present the authentic voice of service
users who know best what works for them.77
 Promoting independent living is therefore about ULOs facilitating people
to make the choices that will increase the quality of their lives, reduce
dependency and ultimately enrich community life by supporting inclusion.
It is not about people struggling to carry out all the basic tasks of daily
living by themselves. There are some positive case study examples of
ULOs promoting independent living for individuals in different and creative
ways.
 A West London ULO supported a group of 25 people with learning
disabilities to pool their direct payments to pay the lecturer for a theatre
course they had previously attended at a local college – because the
college was withdrawing the course.78
 Another ULO supported a retired man who had mental health issues to
use his personal budget to buy a dog. Having the dog made him more
motivated to get out of the house, helped him to meet and talk to other
people and thereby was instrumental in increasing his confidence and
rebuilding his links with the community.79
 A third ULO developed an ‘Agenda for Youth’ which provides a range of
services for young disabled people. These include holiday activities, work
experience and volunteering, and enabling young disabled people to
access mainstream youth provision. One group formed a rap band, cut a
CD and went on to perform live at festivals across London.80
Traditional or Individual Model of Disability: A Summary
In Traditional Model Terms, What is the “Problem” of Disability?
 Disabled people are seen as the “problem” that needs to be sorted out
 This approach is also called the individual or medical model
 The charity model is also associated with this approach
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How Does this Model Tackle the “Problem”?
 A diagnosis is made and an impairment label is given as a passport to
any further action
 Assessment and treatment
 The person is slotted into existing services
 The person is cured or made as “normal” as possible
 If the person can’t be “cured” then “care” is provided (by statutory services
or charities)
What are the Consequences for Disabled People of Adopting a Traditional
or Individual Model Approach to Understanding Disability?
 They are segregated, separated or excluded from mainstream provision
and provided with “special” services
 Different aspects of their life are “dealt with” by many different services
 They may feel they are a burden
 They are expected to be grateful, passive recipients
 They may lack confidence and skills
 They may believe messages that they are dependent and less capable
What are the Consequences for Non-disabled People of Adopting a
Traditional, Medical, Individual or Charity Model Approach?
 Fear, pity and guilt are common reactions
 Negative language and descriptions become the norm (“can’t”)
 They may ignore or avoid disabled people due to embarrassment
 Or they may be over-nice, over-protective, patronising or want to care for
disabled people
 The extremes of abuse, exploitation or hate-crime against disabled
people occur when power is abused
What are the Broader Consequences for Society of Adopting a
Traditional, Medical, Individual or Charity Model Approach?
 Society sees impairment an individual tragedy so devalues lives
 Impairment is seen as a deviation from the “norm”
 Collective pity (and guilt) results
 Charitable help is provided, controlled by non-disabled people
 “Special” provision is made (services, education and training)
 Society continues to exclude and fails to make real change
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The text contents of the following diagram can be found on the next page.
The traditional model says the “problem” is the disabled person
Disabled people can’t... climb
stairs, hold down a job, hear, see,
use public transport, use mainstream
services and facilities... etc.
Diagnosis, assessment,
labelling, treatment - labels are
the passport to services – but
individuals are a problem
because they don’t fit neatly into
the labelling system
The disabled
person is the
problem that
needs to be
sorted
Got an “attitude” – got a
chip on his shoulder,
always complaining, never
appreciates help, won’t take
advice, angry and
ungrateful
Tragic – life not
worth living if he
can’t..., worst that
could happen, but
plucky, brave,
manages despite
her disability, etc.
Is a burden – needs care and
help, doesn’t contribute, is a drain
on the family and society, needs
protection because is vulnerable,
is difficult to manage, hard for
carers to cope with
With the traditional, medical, charity or individual model
approaches, the “problem” is dealt with by cure or care
83
Text of Diagram
The diagram summarises the traditional, individual, medical or charity models of
disability. A box at the top of the diagram contains the statement “The
traditional model says the ‘problem’ is the disabled person”.
The diagram has a central circle with the statement “the disabled person is the
problem that needs to be sorted”. Five arrows point inwards towards the circle
with different issues typically associated with these traditional approaches to
disability.
Diagnosis, assessment, labelling, treatment - labels are the passport to
services – but individuals are a problem because they don’t fit neatly into the
labelling system.
Disabled people can’t ... climb stairs, hold down a job, hear, see, use public
transport, use mainstream services and facilities ... etc.
Got an “attitude” – got a chip on his shoulder, always complaining, never
appreciates help, won’t take advice, angry and ungrateful.
Tragic – life not worth living if he can’t.., worst that could happen, but plucky,
brave, manages despite her disability, etc.
Is a burden – needs care and help, doesn’t contribute, is a drain on the family
and society, needs protection because is vulnerable, is difficult to manage, hard
for carers to cope with.
A final box at the bottom of the diagram says that “With the traditional, medical,
charity or individual model approaches, the ‘problem’ is dealt with by cure or
care.
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Social Model of Disability: A Summary
In social model terms, what is the “problem” of disability?
 The barriers created by society
What are these barriers?
 Physical/environmental
 Information/communication
 Organisational/institutional/administrative
 Personal/attitudinal/societal attitudes or culture
What are the consequences for disabled people of adopting a social
model approach and dismantling the barriers?
 They no longer have to perceive themselves as “the problem” which
results in an increase in self esteem and self confidence
 They perceive themselves as citizens with equal rights, aspirations and
expectations
 As barriers are removed, they become better skilled and equipped to
make a contribution to family and social life, community and society
 They have more dignity, more choice, more control and autonomy
 Full participation and inclusion becomes a reality
What are the consequences for non-disabled people of adopting a social
model understanding of disability?
 They develop a sense of indignation at injustice and inequality
 They increase their understanding of disabled people’s situations by
learning from them
 It is a “no-blame” model that results in greater co-operation to develop
problem-solving approaches to removal of barriers
 They can support disabled people to achieve the changes needed to
secure equality
 Non-disabled people are empowered by their role as allies
What are the broader consequences for society of adopting a social
model approach?
 Society considers exclusion an infringement of Civil Rights
 Legislation and regulations are passed to address inequality
 Collective action and practical measures are taken which promote
inclusion at all levels
 Action which is taken to increase the inclusion of disabled people results
in the removal of barriers for other groups
 There are economic and social benefits of greater inclusion
 A fairer society evolves, enriched by diversity
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The text contents of the following diagram can be found on the next page.
The social model says the “problem” is not the disabled person
Institutional barriers,
including discrimination,
inflexible and unfair systems,
legal inequality, administrative
and organisational barriers
Attitudinal barriers,
including negative and
disempowering attitudes,
prejudice, pity, being
patronised, stereotyping,
assumptions
Barriers in
the disabling
world are
the problem
Information barriers,
information not in
accessible formats,
inaccessible websites,
insufficient information for
people to make informed
choices
Inaccessible physical
environments, including
transport, poor design of
products, consumer items,
work and leisure equipment
Communication barriers,
shortage of sign language skills
among non-Deaf people, lack of
knowledge about good
communication practice,
assumptions everyone
communicates in the same way
With the social model approach, the “problem” can be dealt
with as these barriers can be identified and removed
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Text of Diagram
The diagram summarises the social model of disability. A box at the top
contains the statement “The social model says that the ‘problem’ is not the
disabled person”.
A circle in the centre of the diagram has the words “the barriers in the disabling
world are the problem”. Five arrows point out from this statement to different
types of barrier.
Institutional barriers, including discrimination, inflexible and unfair systems,
legal inequality, administrative and organisational barriers.
Attitudinal barriers, including negative and disempowering attitudes, prejudice,
pity, being patronised, stereotyping, assumptions.
Inaccessible physical environments including transport, poor design of
products, consumer items, work and leisure equipment.
Communication barriers, shortage of sign language skills among non-Deaf
people, lack of knowledge about good communication practice, assumptions
everyone communicates in the same way.
Information barriers, information not in accessible formats, inaccessible
websites, insufficient information for people to make informed choices.
A final box at the bottom of the diagram states: “With the social model
approach, the ‘problem’ can be dealt with as these barriers can be identified
and removed”.
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Talking The Social Model: Some Tips on Inclusive Language and
Terminology
Language matters! The words and phrases we use give clues to how we
perceive the world – and in this case, how we think about disability and
disabled people. There is plenty of research to show that the language we use
influences the speaker and those on the receiving end. Language grows,
develops and changes as new ideas emerge – and this has been an important,
exciting and dynamic part of the equality agenda.
There are good reasons for choosing particular words and phrases over others.
It is not just about using the “right jargon”. It is particularly important for
organisations and individuals taking an approach based on the social model of
disability – the way things are expressed will contain strong messages.
Developing a proper understanding of what we write or how we speak about
disability and disabled people is a challenge to our set ways of thinking.
The examples on the following pages therefore suggest why certain terms are
usually preferred when talking about disability and disabled people, as well as
which terms more commonly are used or preferred. It explains more about the
differences between social model and traditional model ways of using language
and illustrates alternative approaches. Of course, not everyone agrees all the
time, but knowing why a word or phrase is used is key to avoiding offence and
using more positive and empowering language.
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Negative, offensive or traditional
model language
More positive or social model
language
People with disabilities
Disabled people
The first phrase suggests the person has the disability. In social model terms, a
person has an impairment (or impairments) and is disabled by barriers in
society. These barriers may be environmental, organisational or administrative,
communication, information or attitudinal barriers.
The disabled
The blind
The deaf
The mentally ill
Disabled people
Blind people
Deaf people
People with mental health issues or
mental health support needs
It is inappropriate and dehumanizing to group people together with “the” (this
includes other general terms such as “the elderly”, “the homeless”, “the
unemployed” etc.). As well as dehumanizing, it masks the diversity within these
broad groupings.
Able-bodied
Normal
Non-disabled people
“Able-bodied” implies that all impairments are physical. “Normal” suggests that
disabled people are abnormal – what is “normality”? There is no such thing!
Suffers from…
Afflicted with…
Crippled by…
Lives with…
Person who has…
These terms can give a negative and passive impression (and are usually
followed by the name of a medical condition). Question whether you really
need to name the medical condition at all. It is not usually relevant.
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Victim of...
Sufferer
Vulnerable
Person with or experiencing…
Survivor
Victim or sufferer-oriented language reinforces ideas of passivity and the
inevitability of being “done to”. In the same way, there has been a shift away
from descriptions of people as being “victims” of domestic violence or racial
harassment to terms such as “survivor of domestic violence” or “person
experiencing racial harassment”.
The traditional or charity models of disability have depicted disabled people as
victims or sufferers in need of sympathy and care. People who are pitied will
never be seen as equals. The reality is that most disabled people are
resourceful problem-solvers who daily tackle the barriers that disable them.
Similarly, it is not possible to see a disabled person who is labelled “vulnerable”
as a full and equal citizen with the same rights and aspirations as non-disabled
people. Where this term is used in relation to disabled people at risk of abuse
and exploitation, the focus of the language needs to be on the behaviour of
other people and on ways to avoid that discrimination, exploitation and abuse of
disabled people.
Care
Support
Personal assistance
Many disabled people now feel the term “care” suggests frailty and
dependence, and will choose these other more positive terms. Hence
“personal assistant” or “support worker” rather than “carer” as the former
suggest a different type of relationship. Ask a British Sign Language user to
show you the two signs for “care” and “support”!
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An epileptic
A paraplegic
A dyslexic
A spastic
A Down’s Syndrome boy
Person with epilepsy
Person with paraplegia/wheelchair
user
Person with dyslexia
Person with cerebral palsy
Boy with learning difficulties
A disabled person should never be described in terms of their impairment in this
way. If it really is necessary to mention the name of the impairment or condition
then it should always be as a “person with” that impairment. However, as
mentioned above, question whether it is really helpful to know the name of the
impairment at all. How can this help in understanding the kind of barriers that
person experiences and how those barriers can be removed?
Severely deaf
Moderate hearing loss
Profound, moderate, mild learning
disabilities
Completely blind
Labels such as these are generally
not helpful in practical terms as
they give no information about the
level or nature of the barriers
people face
Such labels are commonly applied in traditional ways of talking about disabled
people. Some of them may have specific meanings in medical assessment
terms; to lay people they are open to individual interpretation. From a social
model perspective they are not at all useful as they do not provide any
information about ways that barriers can be tackled. It is far more useful to say,
for example, “She uses British Sign Language”, “He needs an induction loop at
meetings”, “An open plan office would create barriers for him due to the
background noise”, etc.
What special needs do you have?
What is your impairment?
What’s wrong with you?
What are your access needs?
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Everyone’s needs are “normal” to them and many disabled people won’t relate
to the term “special needs”. “Access” can be used in the widest sense to
describe environmental, information, communication requirements etc. This is
a useful phrase when considering what needs to be put in place for a disabled
person attending a meeting, interview or event. (See the sample Booking and
Access Needs Form elsewhere in this Support Pack.)
For example, to know that somebody has multiple sclerosis will not give you
accurate information if you are booking them a place at your organisation’s
event. Asking someone “What’s wrong with you?” – a very common question
which disabled people are frequently asked – immediately implies the negative
and most disabled people will find it extremely intrusive. What will give you the
right information is if you ask about what adjustments someone needs to be
fully included. In other words, what barriers need to be removed? If an event,
for example, is organised on inclusive principles, there will be fewer barriers
which need to be removed (see the chapter on Organising Inclusive Events in
this Support Pack).
Wheelchair bound
Confined to a wheelchair
Restricted to a wheelchair
Wheelchair user
A wheelchair is an aid to freedom and mobility for most wheelchair users, not
something that “binds”, confines or restricts them. Problems arise when the
physical environment is inaccessible to wheelchair users.
It is also important to remember that there is a person in a wheelchair – avoid,
for example, signs that say “Wheelchairs this way”, “Wheelchair ramp”.
Alternatives would be “Accessible route” or “Step-free route” or just “Ramp”!
Mentally ill
Mental
Mad
Has mental health issues
People with mental and/or
emotional distress
Mental health system survivors
People with mental health support
needs
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There are many offensive terms for people who live with mental and emotional
distress (bonkers, barking, crazy, off his trolley, loony, batty, a sandwich short
of a picnic, schizo, psycho, etc.). It goes without saying that these should never
be used even in jest since they will cause extreme offence. Many people
experience periods of mental distress during their lives, although for most these
are temporary and relatively short-lived. For others who live with regular and
profound mental health issues, negative language and labelling can be a major
problem, particularly as the attitudes of society and other individuals can be the
greatest barriers to social inclusion. Some people who have had negative
experiences of the mental health system choose to call themselves “survivors”,
and indeed there is a network called Survivors’ Poetry.
Deaf and dumb
Deaf
Sign language user
The term “dumb”, which was once a common term for profoundly deaf people is
clearly an offensive one as it suggests they are stupid.
Cripple
Invalid
Handicapped
Disabled person
“Cripple” comes from old English words meaning to creep or be without power.
Invalid = in-valid. Many disabled people find the term “handicapped” offensive
because of its association with the old images of begging “cap in hand”.
Retarded
Backward
Simple
Mentally handicapped
Person with learning difficulties (or
learning disabilities)
Most organisations of people with learning difficulties have chosen this term
over learning disabilities as they consider it more in line with the social model
approach and philosophy.
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Dwarf
Midget
Short people
Short stature
Person of restricted growth
The terms dwarf and midget, through common usage and through their
historical connections, have developed negative connotations.
Disabled toilet
Wheelchair toilet
Disabled facilities
Disabled parking
Accessible toilet
Accessible facilities
Designated or ‘blue badge user’
parking bays
These are lazy terms which, when taken at their literal meaning, are
nonsensical!
Electric chair
Electric wheelchair
Power chair
Powered wheelchair
The dislike of the term “electric chair” is due to its other use to describe a form
of capital punishment. Power chair is also more accurate as a description.
Brainstorming
Thought shower, ideas session,
thought mapping, creative or
freethinking session
Finding alternatives to the term “brainstorming” has been ridiculed in many
quarters. However, many people with neurological impairments and epilepsy
originally identified this as an unacceptable and uncomfortable term. Many
other far more accurate and descriptive terms are now widely used.
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She can’t use public transport
Public transport is inaccessible
He can’t work due to his disability
He experiences discrimination in
finding employment or
His employer failed to make
reasonable adjustments for him
She isn’t independent in the basic
activities of daily living
She needs support with personal
hygiene and household tasks
The language of “s/he can’t” or “s/he is unable to due to impairment/disability” is
a key area where a social model perspective changes the words we use. Such
“can’t” language always needs to be challenged and the question asked “what
are the real barriers?”
These may be poor design features and the physical environment which limit
independence and easy access. It may be information barriers (is the person
getting the right information about support options, for example, or is
information being given to them in a format they can easily access?). It may be
communication barriers (does the person have the right pieces of equipment to
assist communication? Are they being provided with human communication
support at appropriate times? Are those around the person receiving training
on improved communication skills with the individual?).
Organisational, institutional or administrative barriers are responsible for limiting
people’s life chances – in particular when people are expected to fit into preexisting services or structures.
Attitudinal barriers are often revealed in the language we use. Words such as
“tragic” and “brave” are typical of the individual or medical model of disability,
which sees the person’s situation as a personal tragedy rather than expressing
indignation at the barriers or inequality they face.
Making assumptions and talking about what people can’t do should be left in
the past with the traditional or individual model of disability. Wherever the
phrase “can’t do due to their impairment” is used of a disabled person, there
should be a rewording or questioning – with the right equipment, adaptations,
environment, information and attitudes of other people, in many cases that
person probably can! Adopting the language of the social model means that
the words we use reveal a positive attitude to identifying – and more importantly
– dismantling barriers to full inclusion.
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Disability “Etiquette”: Working More Effectively with Disabled
People
These are some general guidelines for working effectively with disabled people.
Everyone’s requirements will of course differ, but the key is to ask first, then
give help in the way it is asked for.
In General
 Offer help if the situation seems appropriate or if you are asked, but check
that help is needed first.
 Don’t be embarrassed to ask disabled people what help they need – they
are the experts. Take the time to listen properly to what they say and do
what they ask, in the way they ask.
 Be careful with touch! If you need to use touch to attract someone’s
attention, do it gently on the hand, arm or shoulder.
 Don’t make jokes, light hearted remarks or ask questions about their
impairment, wheelchair or assistance dog.
 When the disabled person is accompanied, always speak directly to the
disabled person, not to their interpreter, support worker or personal
assistant. Disabled people may introduce their personal assistant (PA) to
you, but not all will do so.
 Give, or offer, any information, leaflets, forms etc. to the disabled person
not to someone who is with them (if the disabled person needs assistance
taking or holding the leaflets, they will have their own way of indicating
this to their PA).
 Ignore assistance dogs (guide dogs, hearing dogs, support dogs etc.)
while they are working and always ask the owner first before you pay any
attention to them when they are not working.
 Don't make assumptions that people are non-disabled if their impairment
isn't obvious, for example, tell everyone about lift access.
Communicating With People Who Have Hearing Impairments or Deaf/Deaf
People
 Face the person and ensure you have good light on your face.
 Make sure you have the listener's attention before you start speaking,
perhaps using a slight wave of the hand or light touch on the arm.
 Speak clearly but not too slowly, and don't exaggerate your lip
movements as this will make it harder to lip read.
 Don’t turn away or look down when speaking (e.g. writing notes).
 Use natural facial expressions and gestures.
 Don’t chew gum, eat, suck your pen, put your hand in front of your face or
otherwise obstruct your mouth when speaking.
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 If you're talking to a deaf person and a hearing person, don't just focus on
the hearing person.
 If someone is using communication support, always remember to talk
directly to the person you are communicating with, not the interpreter.
 Don't shout or raise your voice. It may be uncomfortable for a hearing aid
user and it looks aggressive.
 If someone doesn't understand what you've said, don't keep repeating it in
the same words. Try saying it in a different way instead.
 Find a suitable place to talk, with good lighting and away from noise and
distractions.
 Focus on the person you are talking with- don’t get distracted by things
going on around or break eye/face to face contact.
 Use plain language and don't waffle. Avoid jargon and unfamiliar
abbreviations.
 Stripes or ‘loud’ patterns (whether on your clothes or on furnishings
around) make it harder for someone who is concentrating hard on
lipreading. Unruly moustaches and beards make lipreading difficult or
impossible – neatly trim your facial hair!
Working With Wheelchair Users
 Try to get on the same level as a wheelchair user otherwise they’ll end up
with a crick in their neck!
 Don’t lean on someone’s wheelchair, hang bags or coats on it – it is their
personal space.
 Never move someone’s wheelchair without being asked.
 If you are asked to push someone’s wheelchair, don’t leave them facing a
wall or facing outside of a conversation group.
Working With People With Learning Difficulties
 Adults with learning difficulties are adults – treat them as such.
 Use plain language but don’t patronise.
 Check if someone needs the information written down to take away or in
another format such as easy-read.
 If someone has an advocate, friend or support worker with them, speak to
the person with learning difficulties, not the other person and allow time
for the advocate to explain and communicate information.
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Working With People With Mental or Emotional Distress, Mental Health
Support Needs
 Try to find a calm, un-stressed environment in which to communicate.
 Be prepared to take more time over the communication, with breaks if
necessary. Have patience.
 Check that the pace of the meeting/interview is appropriate.
 Offer to write down the main points or agreements from the
meeting/interview so the person can review them later.
 If someone has an advocate, friend or support worker with them, speak
directly to the person with mental health issues, not the person
accompanying them.
 Don’t shout or raise your voice, it can sound aggressive and threatening.
Working With Blind and Visually Impaired People
 When meeting a blind or visually impaired person (particularly if they don’t
know you or don’t know you well) introduce yourself by name.
 In a meeting, ask everyone who is in the room to introduce themselves
and let the blind person know if someone leaves the room or anyone else
enters
 Some blind or visually impaired people may request that everyone says
their name each time they speak or the Chair clearly says the person’s
name before they say something. (This also helps interpreters working
with Deaf people.)
 If you are moving away from a conversation, let the person know
(otherwise they may continue to talk to you when you’ve left).
 If you are putting something (e.g. food or a drink) in front of someone, let
them know where it is – don’t grab their hand and put it on the cup/glass
etc.
 Check the format of information in which the individual needs follow up
information or confirmation of the main points of the meeting/interview.
 Don’t grab someone’s arm and propel them somewhere. If you have
offered assistance and the person wants you to guide them, they will
usually prefer to hold your arm as you walk.
 Let the person know if there are steps up or down or other hazards.
Leave enough room so you don’t walk the person into obstacles.
 If you are giving directions, be specific (e.g. ‘the door to your left’ not ‘the
door over there’).
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Working With People With Speech Impairments
 Be prepared to take more time. Have patience – don’t be embarrassed
about having to ask (even several times) what someone has said. You
may need to say that you are ‘stuck’ at a certain point in what they are
saying – ask them to use different words. You may also ask them to
confirm what you have heard.
 Make good eye contact and concentrate on what they are saying rather
than how they are saying it.
 Don’t finish people’s sentences for them.
 If you are talking to someone with a voice communicator or AAC
(Augmentative and Alternative Communication) device, give time for the
person to talk, to participate in discussions, to sign, use facial expressions
or use their PA (personal assistant) to assist in communicating, if the
person indicates this as an option.
Removing Information Barriers: Providing Accessible
Information
This chapter gives basic guidance about producing information in accessible
ways and suggests other useful resources for reference and further detail.
Accessible information enables people to find out about services, make
informed decisions and take a fuller part in meetings and other activities.
Informed decision-making helps promote people’s dignity. It is an important
aspect of independent living, making choices and having control over key
aspects of daily life. An amendment to the Equality Bill now makes it explicit
that taking reasonable steps to provide accessible information will be part of the
legal duties of service providers.81
It is straightforward to ensure that written information is made more accessible
in its basic format (see the clear print guidelines below). From this starting
point it is fairly simple to provide alternatives including Braille, audio tape, large
print, computer disc/electronic formats, British Sign Language videos or DVDs
and easy read (simple words and pictures) format.
It is always more efficient to start out by creating and storing a document in
basic text (for example, in RTF or notepad-type programmes) without
formatting, complex layout etc. This is then available if different versions need
to be produced later. Formatting creates a series of programming symbols
which will ‘confuse’ some transcription software (for example, software that
produces Braille) or screen-reading software which ‘reads’ text.
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Clear Print Guidelines
These guidelines will make information much more accessible for all readers,
and particularly those with visual impairments, dyslexia etc.
Type Size – A minimum type size of 12 point should be used. Ideally 14 point
should be the ‘standard’ print. The larger the minimum type size, the more
people will be able to read it.
Contrast – The better the contrast between the background and the text, the
easier it will be to read. Black or dark blue on off-white, cream or strong yellow
backgrounds is generally recommended (although some people – for example
people with dyslexia – may have more different requirements). Avoid putting
text over the top of pictures, however much they are ‘faded’ into the
background.
Typeface (Or Font) – Typefaces that are san-serif (without decoration) such as
Arial, Verdana or Tahoma are considered to be the most accessible fonts.
Avoid anything that is ornamental, decorative or in a handwriting style.
Typestyles – Avoid using blocks of capital letters, underlining or text in italics
as these are harder to read (and for some people blocks of words in capital
letters may communicate ‘written shouting’). Many people use the shapes of
words to help them, and these are lost when putting whole words in capital
letters.
Type Weight – Bold or semi-bold type weights are more accessible than light
ones.
Numbers – Always choose a typeface or font that is clear. Easily misread
numbers include 3, 5, 8 and 0.
Word Spacing – Keep the same amount of space between each word as this
makes text easier to read (see also comments on justified text under
‘alignment’).
Alignment – Always align text to the left margin as it is easier for readers to
find the start of the next line. Justifying the text (stretching the words to
completely fill the line) will produce uneven spaces between words and makes
reading more difficult.
Text Blocks – All readers will have difficulty processing large blocks of text.
Try to break large amounts of information up with sub-headings and into shorter
sections and paragraphs.
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Spacing And Layout – Use plenty of ‘white space’ between paragraphs and
blocks of text so that the page layout is not crowded or too busy. Avoid using
text boxes as the text inside the box becomes inaccessible to screen-reader
users as the box is treated like a picture.
Columns – In general, it is better to have text in one column. However, if there
are more, ensure that the margin between columns is wide enough to clearly
separate them. If space is limited, use a vertical line.
Reverse Type – If you are using white type, make sure that the background
colour provides sufficient contrast. Do not use a lot of reverse type (white letters
through coloured background) as it is less accessible for most readers.
Forms – Allow plenty of space on forms which are to be completed in
handwriting. Make forms available electronically as well and check that they
are usable by screen-reading software (generally forms created with boxes as
Word tables are accessible). There may be difficulties with forms designed and
protected using the options on the Forms toolbar in Word as screen-readers
ignore any instructions that are not part of the areas that need to be completed.
Navigational Aids – Always place headings and page numbers in the same
place on each document.
Paper – Avoid using glossy paper that can produce a glare and make it difficult
to read. Use paper that has a weight of at least 90gsm. Thinner paper can
cause text to show through from the reverse side, making it difficult to read.
Other Guidance for Producing Accessible Information
Information on the Royal National Institute of Blind People (RNIB) website gives
further guidance on producing accessible printed and electronic information and
developing accessible websites
http://www.rnib.org.uk/professionals/accessibleinformation/accessibleformats/P
ages/accessible_formats.aspx
The RNIB produces a publication ‘See It Right’ which can be ordered via their
website at
http://www.rnib.org.uk/professionals/accessibleinformation/Pages/see_it_right.a
spx
The United Kingdom Association for Accessible Formats (UKAAF) develops
and promotes best practice for the production of material in accessible
formats.82
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Other Commonly Used Formats
Some of the most commonly used formats include:
 Large print (generally 18 but sometimes 24 point type)
 Electronic (either Microsoft Word or RTF text-only) versions
 Braille
 Audio tape
 Audio CD
 British Sign Language DVD (often with sub-titles) or videos
 Easy read or easy words and pictures versions
 DAISY (Digital Accessible Information System)83
 Tactile maps and diagrams
Appendix 3 in this Support Pack contains information on local sources of
support and resources, including suggestions on where organisations can have
information transcribed into other formats.
Easier Read or Easy Words and Picture Formats
Change, an organisation of people with learning difficulties, has produced a
helpful, basic guide to making information more accessible.84 Change and other
organisations often work with government departments and other public sector
bodies to produce easier read versions of complex documents and these can
be useful models for organisations wanting to create easy read documents.
Examples can be found on various government department websites.85 Another
advantage of such formats is that they are much more accessible to those
whose first language is not English and those who, for a variety of other
reasons, find written information a barrier.
People with learning or language difficulties will need easier read versions of
longer documents or versions with easy words and pictures. They may also
need extra time and support to access information given to them, no matter
how accessible it is.86 For people with learning, language and reading
difficulties, accessible information is information that is short and clear. In most
cases it will be necessary to:
 Go through the text and pick out the important facts
 Summarise the main message(s)
 Simplify complex information and explain it using examples from everyday
life
 Use figures for numbers, not words and use “do not” rather than “don’t”,
“will not” rather than “won’t” etc.
 Where it is useful for people to be aware of ‘jargon’ words, explain them in
easier terms first and use the ‘jargon’ in brackets afterwards, or vice
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



versa. For example, “the group of people who run the organisation
(Board of Trustees)”.
Break information up into smaller chunks and consider producing these
separately
Use simple, uncluttered pictures to illustrate sections of text and make
sure that the picture actually reflects what the text is saying (don’t use the
same picture with different bits of text that say something different)
Keep the picture close to the text which it describes
Use thumbs up or thumbs down for good and bad, yes and no etc. and
use arrows to point to important features in a picture87
Two key organisations of people with learning difficulties (People First and
Change) produce picture banks on CD to make information more accessible to
people with learning difficulties
http://www.peoplefirstltd.com/shop-CDs.php and
http://www.changepeople.co.uk/category.php?type=1
Some free pictures and symbols (and information on providing information in
accessible formats) are available on the Inspired Services website,
http://www.inspiredservices.co.uk/
Organising Inclusive Events: Guidance Notes
This chapter gives some guidance notes about organising accessible and
inclusive events and activities. It aims to cover some of the main issues which
organisers should address at any type of event – more detailed information can
be found in other resources if necessary. 88 Some issues highlighted in the
guidance will be more relevant to certain types of event than others, but
whether it is the regular meeting of a service-user group or a major consultation
exercise with staff, volunteers and services users, the ULO’s Annual General
Meeting or a small, meet-the-Trustees event, the underlying principles and
main issues will remain the same.
Key to ensuring that events are properly inclusive is thinking ahead to anticipate
and remove any barriers which may exist. Depending on the nature of the
event, these are likely to include transport, environmental barriers at the venue,
financial barriers to attending, information, communication and participation
issues. Anticipating and planning for accessibility in this way will reduce the
number of one-off adjustments necessary for individuals. The chapter is
organised under the following headings:
 Planning and preparations
 Booking and contacts
 On the day
 After the event
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Planning and Preparations
 Who Does The Planning?
 Depending on the nature of the event it is important to include a
diverse range of people in the planning process to get different
perspectives and expertise.
 If appropriate, use feedback or comments from previous, similar
events to inform the planning.
 Do you ask service users, for example, for ideas of speakers or
themes for AGMs?
 Dates For The Event(s)
 Check that the proposed date(s) do not clash with other relevant local
events.
 Check that there is no overlap with major religious and cultural
festivals. Various multi-faith calendars exist on the internet.89
 If the event is one of a regular series, try to identify the whole
programme of dates for six months or a year ahead as this will help
with people’s planning, for example, organising personal assistance,
transport etc.
 Create a timeline which will help in general planning as for any event, and
will also identify cut-off dates for providing:
 information to people who are transcribing paperwork into accessible
formats, and
 sending advance paperwork to participants and communication
support professionals, etc. For many people, having sufficient time to
read/access materials for the event well in advance is vital for full
participation.
 The venue should of course be physically accessible to wheelchair users
and others with mobility and sensory impairments. The following issues
should also be considered.
 Everyone should be able to use the same entrance and access all the
facilities for the event (for example, the café, relaxation zones,
exhibition areas, crèche).
 There should be plenty of space available for the numbers attending,
bearing in mind some people may be wheelchair users, have other
mobility aids etc. and may have support workers, advocates or
assistance dogs with them.
 Are there enough small (‘break-out’ or syndicate) rooms for workshops
or small group activities, if appropriate, so that people can work
without background noise from other groups?
 If it is a large and busy event, it is good practice to have a quiet room
available – people with mental health issues, with fatigue and people
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using communication support (which takes considerable
concentration) may all appreciate a quiet space, as may people who
want to pray.
Ideally the main activities of the event should all take place on the
entrance level (to save queuing and waiting for lifts) and accessible
toilets should be on that level for the same reason.
Are there enough accessible toilets? (Ten people needing to use one
toilet in a twenty minute break equals discomfort, distress and a
timetabling nightmare!)
Are there adult changing facilities available?
Is there sufficient parking nearby (including parking for blue badge
holders)?
Is the venue on good public transport routes?
If the venue is one run by an outside organisation (public, voluntary or
private sector) does it comply with the Disability Discrimination Acts’
requirements (including provision of induction loop or infra-red hearing
systems)?90
If you do not know it already, visit the venue to make your own
assessment as the venue staff’s judgement of what is accessible may
not be sufficiently rigorous!
 Booking interpreters, other communication and language support
and personal assistance is a priority once the date and venue are
agreed.
 Communication support for Deaf/deaf/deafened people and people
with hearing impairments may include British Sign Language (BSL) or
Sign Supported English (SSE) interpreters, speech to text reporters
(often called Palantype operators) and lip-speakers. Some people
may also request note-takers. Deafblind people are likely to use
manual alphabet or hands-on signing.
 People who provide such communication and language support are
often collectively known as Language Support Professionals or
Language Service Professionals or LSPs.
 It is important to make the booking for the appropriate LSPs quickly
but once booking for the event closes, if they will not be required the
booking should be cancelled – there is a shortage of LSPs and they
may be needed elsewhere.
 If it is an open event without a registration or book-by date,
communication support must be provided to make the event
accessible.
 Individuals who need communication support due to speech
impairments are likely to have their own personal support worker, and
people with learning difficulties may also have their own advocate or
support worker.
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Also be aware that there may be requests for community language
interpreters.
Make sure you book sufficient communication or language support to
allow for covering breaks and meal-times (bearing in mind LSPs will
need breaks too). Whilst some people using communication support
prefer to have time-out during breaks, others will want to participate in
the important informal networking which goes on outside of structured
sessions.
Sources for booking LSPs and community language interpreters are
given in the chapter on local resources.
Depending on the nature of the event, ‘roving’ support workers should
be available for people who do not have individual Personal Assistants
to assist with directions, accompanying people round the venue,
carrying refreshments etc.
Will you need to offer (and book) support workers for individual
participants? If so, ensure the agency and Personal Assistant (PA)
understands the nature of the assistance required and works to an
empowerment model.91
Will you need to book a crèche or other childcare facilities at the same
venue? If so, be aware that such facilities must also be accessible
and of course will need to comply with current regulations and
requirements for childcare.92
 Publicity (where appropriate)
 Any publicity should be made available in different formats (see the
Accessible Information Chapter for more details) and distributed with
sufficient time for people to book transport and support.
 Are the key details clear on the publicity – date, time, venue, what the
event is about and who it is for, who to contact for information, how to
register?
 How can you ensure that publicity reaches those whose voices are
seldom heard? If appropriate to the event, do you need to think of
new and different ways of getting the publicity out to reach different
communities or your members/service users who may be less
confident about being involved?
 Is the language on publicity inclusive, consistent with the social model
and jargon-free?
 Programme structure, activities and timetable all need to be inclusive.
 Consider the mix of types of activities such as presentations/large
groups, smaller groups, etc. Allow plenty of time in the agenda for
moving between activities (e.g. if people are working in smaller groups
in syndicate rooms, it may take some people more time to move
around the venue). Having a series of shorter sessions with regular
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breaks is preferable. This allows for breaks for LSPs as well as being
more inclusive for participants.
Wherever feasible, events should not begin before 10am to benefit
those who use less flexible personal assistance; this may also help
those with public transport passes that can only be used later in the
morning.
 Briefing Speakers, Workshop Leaders, Personal Assistants, Support
Workers And Venue Staff
 Where appropriate, provide briefing notes for speakers, trainers and
presenters on the aims/content of their sessions and/or on inclusive
practice and access issues if they are not familiar with these.93
 Presenters and workshop leaders should also be made aware of the
need to keep to advertised timetables.
 If you are employing PAs either for individuals or as general support,
ensure they are fully briefed on inclusive and empowering ways of
working.
 If you are using an external venue you will need to provide additional
information about adjustments you have made and changes that you
want them to make.
 Workshop leaders, trainers and venue staff should also be briefed on
the role of people’s PAs, support workers and advocates to ensure
they understand that the disabled person is the participant.
Booking and Contacts
 Booking and access needs – sample forms are provided as an appendix
separate to this chapter. Closing dates for applications, if appropriate,
should be clear. Booking and access needs forms should be available in a
range of formats.
 Contact point for further information and bookings should include
telephone number, textphone/Typetalk, fax number, mobile number for text
messages and an email address.
 Expenses – where appropriate, tell people about how and when expenses
will be paid, provide the form with booking confirmation if necessary and
tell people about the policy regarding receipts, etc.
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 Distribution Of Advance Information
 Ideally this should take place one to two weeks before the event.
Where possible it should also include key points of presentations so
that there is less unfamiliar material on the day.
 Information should be sent to all participants at the same time,
regardless of what format they have requested. Therefore you need
to ensure the event timetable takes account of time required for
transcribing information into different formats.
 Language Support Professionals and community language
interpreters should also receive this advance information so they are
familiar with topics and any technical language being used.
On The Day
 Registration and reception areas should be as near to the main entrance
as possible, clearly signposted and have
 table(s) at an accessible height and with knee recesses for wheelchair
users and plenty of circulation space around.
 BSL interpreters / lip-speakers available and an induction loop system
at the registration area if any participants have indicated the need for
this on their booking form.
 Sufficient staff / PAs available to provide any additional assistance
requested as people arrive and register.
 Chairs available for participants in registration area.
 Bowls of fresh water for assistance dogs (and make sure assistance
dog users know where these are located) – give information about
nearest outside areas for dogs.
 Plenty of space in all areas where there are exhibitions or displays,
and seats available in these areas.
 Information provided on the day – the delegate or participant pack must
be available in the requested format.
 Provide copies of information circulated in advance, but minimise the
amount of new information given on the day as it will be difficult for
some people to read/access it.
 Include a red traffic light card or symbol for jargon alerts (see footnote
5).
 Include an evaluation or feedback form (some people will prefer to
take this away to complete, so give details of where to return it) and an
expenses form, if appropriate.
 Emergency Egress
 Ensure that information about emergency arrangements is in the
information pack and given verbally.
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Describe layout of the building and whereabouts of accessible exits,
and give clear information about arrangements for assistance in the
event of an emergency evacuation of the building.
 Layout And Use Of Rooms
 Ensure there is good lighting, a comfortable temperature and sufficient
circulation space in all rooms being used.
 Make sure that no obstructions (bags, equipment etc.) are left around
on the floors in any areas being used.
 Make sure that induction loop/infra-red hearing systems are working in
all rooms where they are installed and check that there is no ‘leakage’
of sound between rooms (this can be checked with testing equipment
or, better, by a hearing aid user).
 BSL interpreters should not be seated in front of a door or where
people will be walking in front or behind them. There should be no
background distractions. A plain wall or curtain behind is ideal.
 A clear area between the BSL interpreter and participants must be
available and the interpreter should be appropriately lit, avoiding
shadows on their face and bright light behind them.
 Lip-speakers should be seated in front of those using that service.
 When speech to text reporting (Palantype) is used, the room layout
should be arranged appropriately, whether there is a large screen
display or people using the service have access to a computer screen.
 Ensure that the room is arranged to allow for movement around
tables, chairs and equipment, and provide power points as people
may have computer or other equipment which needs to be plugged in.
 In general, even in presentations or formal conferences, it is best to
provide tables as people will need space to put papers or equipment.
 Ensure that all participants can choose where they wish to sit (within
the parameters of the siting of LSPs, above) and in particular make
sure that wheelchair users are not ‘stuck’ in one place.
 If there are small group activities or workshop sessions, each group
should be in a separate room to minimise background noise and
distractions which may make activities inaccessible to some
participants – this may have implications when people are using LSPs
and induction loops, so try to plan ahead for this.
 Presenters should be aware that it is generally inappropriate to dim
light for slide shows etc. as this will prevent people following LSPs.
 Breaks and refreshments – some of the following issues will relate to
your own timetabling and organisation of the event. If you are using an
external venue, you will need to brief those responsible at the venue on
other issues listed.
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Allow sufficient time for breaks and refreshments. Some people may
need longer to get to the toilet, eat or drink and some people may
have to take assistance dogs outside during breaks.
Ensure communication support is available during the breaks for those
who need it, in particular having BSL interpreters and lip-speakers
available (whilst also making sure that these LSPs have time out).
If food is self-service, ensure that staff or ‘roving’ PAs are available to
assist people with describing what is available, serving food and
carrying trays to the eating area.
Dietary requirements specified on booking forms should be met, such
as vegetarian, vegan, Kosher, Halal, wheat-free and low-fat diets,
each kept on separate plates and well labelled.
A mug may be easier for some disabled people to use than cups and
saucers or plastic cups that do not have handles. Offer drinking straws
as standard. Provide a choice of cutlery and crockery.
Make sure that there are seats and tables available (with moveable
chairs to make space for wheelchair users). Some people need to sit
down or put plates on a table to eat. Seating also helps those who are
talking to a wheelchair user
Even little things matter! Sachets of salt, pepper and sauces or milk in
very small containers can be difficult to open. It is better to have these
in jugs and dishes too or ensure help is available.
 Keep to timetables – it is important to keep to advertised timetables as
some people may have arrangements to meet PAs during the breaks, may
need to know when refreshments are going to be available for timing of
medication and have transport booked at the end of the day.
 Photography
 Avoid the use of flash photography at meetings or events as it can be
inappropriate for people with neurological impairments and others.
 If using photography, check with participants and have procedures in
place for those who do not wish to be photographed.
After The Event
 Expenses, where appropriate
 It is good practice to pay cash expenses on the day of the event to
those who are on low incomes and have had to pay cash for transport
or other agreed expenses.
 Where expenses are paid later by cheque, ensure that they are paid
as quickly as possible.
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 Feedback And Follow-Up Information
 Be positive about all feedback from participants – critical feedback
provides a chance to do it better next time!
 Make sure that evaluation from participants is noted and acted upon,
in particular ensure that any comments about access and inclusion are
used to inform future events.
 Have brief, clear notes of the event which will be helpful and
informative to anyone who was not there, in particular what topics
were reported or discussed, what decisions were taken, who is going
to take action and by when.
 Make sure notes, minutes or reports are in plain English and explain
any abbreviations or jargon.
 Where appropriate, create a separate action plan summarising who is
responsible for each item and target dates.
 Where appropriate, circulate the report, minutes and/or action plan to
participants in their preferred format.
 Speech to text reporter’s transcripts will provide a fuller record of the
event, and these can also be kept for reference.
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Appendix 2: Useful Tools
Becoming a User-Led Organisation: Baseline Assessment
Questionnaire for Organisations Working with Disabled People
Context
User-Led Organisations (ULOs) play an important role in providing voice,
support, services, training and advocacy for disabled people. Many disability
related organisations and other voluntary sector partners are involving their
members or users in setting objectives, making decisions and delivering
services in different ways.
The importance of ULOs has been recognised in a number of key government
policies. IN particular, recommendation 4.3 of the government’s “Improving Life
Chances” strategy states that “By 2010, each locality (defined as that area
covered by a Council with social services responsibilities) should have a userled organisation modelled on existing Centres for Independent Living”.
These organisations are seen as one of the key mechanisms for encouraging
the participation of disabled people, carers and other people who use support in
designing, delivering and monitoring resources and services that support
independent living.
The Improving Life Chances strategy sets out a number of characteristics,
values and minimum services to be delivered by a user-led organisation
modelled on a Centre for Independent Living (CIL).
There are a large number of organisations which work with and for disabled
people with a variety of impairments, and these are also user-led to a greater or
lesser degree. Many of these organisations would like to increase the level of
service user control in their organisations but need support to do so.
Completing The Assessment
This form enables organisations to assess how they currently meet the 21 ULO
Design Criteria as set out in the Department of Health’s User-led Organisations
Policy. Having completed this assessment, they will then be able to work
through the ULO Support Pack to help them meet the Design Criteria and
therefore progress towards becoming a ULO. It can also be used to carry out a
follow-up assessment.
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The chapter “Essential Features of a User-led Organisation: The Department of
Health’s ‘Design Criteria’” provides an explanation of each of the Design
Criteria and should be reviewed in conjunction with this form to help assess
whether the organisation meets each one.
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Baseline Assessment of Organisations Wishing to Develop as
User-Led Organisations
Section 1 - Contact details
Name of Organisation:
Name of person
completing assessment:
Position in Organisation:
Date of first assessment:
Date of follow-up
assessment (if applicable):
Telephone Number
(Voice):
Telephone Number (Text):
Fax:
E-mail Address:
Full postal address:
Section 2 – General Characteristics and Vision
Is your organisation based in East Sussex?
Yes
No
Are you a not-for-profit organisation?
Yes
No
Is your work primarily disability-based?
Yes
No
Please give a summary of the client group your organisation works with.
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What is your organisation’s vision for a User-Led Organisation?
What is your summary of how you see your organisation’s current
position in relation to being a user-led organisation?
Section 3 - Design Criteria
For each of the following Design Criteria (DC), please answer the following:
1.
How do you currently meet the ULO design criterion (if you already do)?
or
2.
How do you intend to meet the ULO design criterion (if you do not already
meet it or need to work on it?
For each of the Design Criteria, please remember to include examples as
evidence to support your answers.
DC1.
The organisation works from a social model of disability
perspective.
DC2.
The organisation Promotes independent living.
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DC3.
The organisation promotes people's human and other legal rights.
DC4.
The organisation is shaped and driven by the initiative and
demand of its constituency.
DC5.
The organisation is peer support based.
DC6.
The organisation covers all local disabled people, carers and
other people who use support either directly or via establishing
links with other local organisations and networks.
DC7.
The organisation is non-discriminatory and recognises and works
with diversity in terms of race, religion and belief, gender, sexual
orientation, disability and age.
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DC8.
The organisation recognises that carers have their own needs
and requirements as carers.
DC9.
the organisation engages its constituents in decision-making
processes at every level of their organisation.
DC10.
The organisation provides support to enable people to exercise
choice and control.
DC11.
The organisation is a legally constituted organisation.
DC12.
The organisation has a minimum of 75 per cent of the voting
members on the management board drawn from its constituency.
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DC13.
The organisation is able to demonstrate that its constituents are
effectively supported to play a full and active role in key decisionmaking.
DC14.
The organisation has a clear management structure.
DC15.
The organisation has robust and rigorous systems for running a
sustainable organisation (e.g. financial management /
contingency planning).
DC16.
The organisation is financially sustainable as there is no central
government funding.
DC17.
The organisation has paid employees, many of whom must reflect
its constituency.
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DC18.
The organisation identifies the diverse needs of the local
population and contributes to meeting those needs.
DC19.
The organisation is accountable to its constituents and
represents their views at a local level.
DC20.
The organisation supports the participation of its constituents in
designing, delivering and monitoring of its services.
DC21.
The organisation works with commissioners to improve
commissioning and procurement.
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User-Led Organisations: A Briefing for Boards of Trustees
Introduction
From October 2009 to March 2010, East Sussex Disability Association (ESDA)
worked as a User-led Organisation (ULO) ‘demonstrator site’. It supported
eight organisations working with disabled people and their carers in East
Sussex to progress towards becoming ULOs in line with the Department of
Health’s 21 Design Criteria for ULOs.
The eight organisations each completed an assessment of their current position
in relation to the 21 ULO Design Criteria and received a package of training and
consultancy time to help them move up the ‘ladder’ towards becoming a ULO.
This included the involvement of a mentee who continues to work with the
organisation beyond the life of the project. The ULO Support Pack was also
developed, with chapters and information covering different aspects of being a
ULO. This is available to support other organisations to create their action plan
for becoming user led. Both Microsoft Word and Adobe PDF versions can be
found on the ESDA website (www.esda.org.uk) and the East Sussex County
Council website (www.eastsussex.gov.uk).
Background
In the last thirty years, the development of the concept of independent living
and autonomy for disabled people has moved rapidly, as have ideas on how to
achieve this independence. This growth and expansion of ideas and activities
has brought us to a position where real improvements are happening in a
society which once confined most disabled people to institutions.
The most significant changes have come about as a result of disabled people’s
own initiative. Many developments have only been possible with the direct
involvement of, and control by, disabled people. The increase in ULOs is
central to the government’s current personalisation agenda.
A government report of 2005, “Improving the Life Chances of Disabled People”,
states that by 2025, disabled people should have the same opportunities and
choices as non-disabled people and be respected and included as equal
members of society. The government also gave a commitment that “by 2010,
each locality (defined as that area covered by a Council with social services
responsibilities) should have a user-led organisation, modelled on existing CILs
(Centres for Independent Living).”94
In some areas it may be appropriate for the services and activities of a CIL to
be provided, or enriched, by a local network of smaller ULOs feeding into a
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central ‘hub’ rather than one organisation working from one location covering all
the services.95 This provides an additional impetus for smaller organisations to
become user-led, in order that they can be fully involved with such a network.
Putting People First (PPF) is a national plan that sets out how the government
wants social care to be provided in the future. It means helping people to stay
healthy and live as independently as possible. It aims to give people who need
social care support more choice and control over what is provided, whilst
receiving high-quality services. A new system called ‘self-directed support’ is
being introduced to give people control to make the choices that work for them.
Social Care
There is widespread backing for the role that user-led organisations have to
play in the current changes in social care: “User-led organisations must have a
crucial role in a new vision of independent living. They can play an essential
role in transforming social care so that services are driven by the needs and
wishes of those who use them to deliver real independent living. When
resourced adequately, local user-led organisations have been found to be the
most effective means of delivering a range of services including advocacy, selfadvocacy, peer support, and supported decision-making. Services can be
greatly improved by the people who use them having a leading role in
delivering, monitoring and evaluating services. User-led organisations can play
a key role in consultation processes because they have a knowledge base
about issues around local service provision. They can also advise on practical
issues on involving more marginalised groups in consultation.”96
Definitions
Different groups use different words. Some older people who need support
would not call themselves ‘disabled people’. Some people who use mental
health support services are not happy with the term ‘independent living’. Some
people don’t like the word ‘impairment’. There are, however, ideas common to
all groups.
The three main ones are:
 The problem is society, a lack of support and barriers to being included,
not the individual and their age, disability, impairment, state of mental
health, etc.
 The most important thing is to have control over the support needed – to
be able to decide who (or what) provides support and how this is done
 “Nothing about us without us” is a phrase used by all the different types of
user-led organisation
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There is a common aim to move away from the charity model, or the approach
which ‘does things to’ or ‘does things for’ disabled and older people. Working
on disability issues is not about ‘doing good’ but about achieving full human and
civil rights for disabled people.
Independent living means having choice and control over whatever is required
in order to go about daily life.
Inclusive living means being fully included in society, with changes being
made in society to ensure this happens.
Service user means 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.
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. The 21 ULO Design Criteria at the end of this briefing define
the key requirements to be a viable and sustainable ULO. It is important to
stress that these criteria may be met in a variety of ways according to local
demand, resources and circumstances.
An organisation can be seen to be “working towards becoming user led” once it
has made the commitment to do so and could then indicate this in its publicity
and marketing material. It could be considered as being in a transitional stage
towards becoming a ULO, allowing some criteria not to be fully met for as long
as is reasonable for the organisation’s situation. This would need to go
alongside the regular evaluation and monitoring of the action plan.
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. A CIL
may be one organisation based in a single location, or it may be a network of
smaller ULOs with a central, coordinating hub that together cover the full range
services and activities associated with a CIL.97
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The social model of disability says that the problem is not someone’s
impairment, illness, frailty, condition, mental health issue or learning difficulty
but instead, the problem is the barriers they experience to their inclusion in
family life, community or society. For example, that they don’t have the
support, equipment or housing they need, they don’t have choice and control
over their daily lives and they experience barriers arising from people’s attitudes
to them. Although the social model of disability was initially developed by
people with physical impairments, it is just as relevant to people with learning
difficulties, older people, and people with mental health support needs.
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User-Led Organisation (ULO) Design Criteria
The design criteria outlined below aim to define the key requirements to be a
viable and sustainable ULO. It is important to stress that these criteria may be
met in a variety of ways according to local demand, resources and
circumstances. Some criteria will take longer than others to achieve.
ULO Values
A ULO should adhere to a minimum set of values. These are that it:
 works from a social model of disability perspective
 promotes independent living
 promotes people’s human and other legal rights
 is shaped and driven by the initiative and demand of the organisation’s
constituency
 is peer support based
 covers all local disabled people, carers and other people who use support
either directly or via establishing links with other local organisations and
networks
 is non-discriminatory and recognises and works with diversity in terms of
race, religion and belief, gender, sexual orientation, disability and age
 recognises that carers have their own needs and requirements as carers
 engages the organisation’s constituents in decision-making processes at
every level of their organisation.
ULO Organisational Characteristics
A ULO should have the following organisational characteristics. These are that
it:
 provides support to enable people to exercise choice and control
 is a legally constituted organisation
 has a minimum of 75 per cent of the voting members on the management
board drawn from the organisation’s constituency
 is able to demonstrate that the organisation’s constituents are effectively
supported to play a full and active role in key decision-making
 has a clear management structure
 has robust and rigorous systems for running a sustainable organisation
(e.g. financial management/contingency planning)
 is financially sustainable as there will be no ongoing central government
funding
 has paid employees, many of whom must reflect the organisation’s
constituency
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 identifies the diverse needs of the local population and contributes to
meeting those needs
 is accountable to the organisation’s constituents and represents their
views at a local level
 supports the participation of its constituents in designing, delivering and
monitoring of the organisation’s services
 works with commissioners to improve commissioning and procurement.
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Template Resolution for Boards of Organisations
Aiming to Become User-Led
The Trustees of ……………………………… confirm that they are committed to
becoming a User-led Organisation (ULO) and will therefore work towards
fulfilling the ULO Design Criteria.
They confirm that they will:
1. Seek a “ULO champion” to work with the organisation’s users, stakeholders
and Board of Trustees (Board), on fulfilling the ULO Design Criteria (listed in
the Briefing for Boards). The Champion would ideally be a disabled service
user and could be an existing Board member. If not already a Board
member, they should be co-opted for the duration of the plan in Point 5,
below or, ideally, be recruited as a permanent Trustee.
2 Commit the organisation to adopting the social model approach to disability
and document this commitment in the organisation’s governing documents
and any public statements of organisational vision and values.
3 Review the organisation’s governing document (constitution or Memorandum
and Articles of Association) and amend them to reflect the commitment to
becoming a ULO, for example, ensuring there is an up to date Equal
Opportunities policy and commitment to recognising diversity.
4 Inform, enable and encourage the organisation’s constituents and users,
whether Board members or not, so that they are engaged at every level of
their organisation, in decision-making processes that affect the way in which
the organisation provides its services now and in the future, for example by
asking the Champion to set up a self-managed user forum which meets
regularly with the Board.
5 Require the Chief Officer and staff to develop, with the ULO Champion and
in consultation with users and stakeholders, a strategic, timed and
measurable development plan for meeting the criteria by an agreed date.
This will include regular evaluation by users and stakeholders, and begin
with an equality impact assessment (EIA) of Board policies and processes
(including meetings, recruitment, induction and training and development of
Trustees). This development plan will address actions required to meet the
recommendations of the audit (EIA) to remove barriers to participation.
Date of agreement ratification:
Signed:
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Equality Impact Assessments
An organisation should check out the potential effect of any new action it takes
or policy it adopts on different groups. In assessing the likely impact, the
organisation can make sure that effect is not a negative one. It is a rewarding
exercise as it can enrich the changes and make sure they are appropriate to all
users and stakeholders, by enabling the organisation to get to know its users
better and remove any barriers to their participation. The organisation has the
reassurance that it is taking full account of these different groups when planning
changes.
This process is known as an Equality Impact Assessment (EIA or EQIA).
It is a way of working with other people (for example local authorities, users and
stakeholders) to consider the accessibility and fairness of an organisation’s
policies and practices in relation to barriers faced by different groups in the
community and by the organisation’s own users and stakeholders. To carry out
EIAs effectively, it is preferable to work with local authority partners, who can
provide useful data on the makeup of the community and share experience and
expertise in carrying out EIAs.
“Impact assessment is a systematic way of finding out whether a policy,
function or service (or one which is proposed) affects different groups
differently. It should be part of a normal policy making process.”98
Point five of the resolution for organisations working to become user-led
requires the Chief Executive and staff to “develop, with the ULO Champion and
in consultation with users and stakeholders, a strategic, timed and measurable
development plan for meeting the criteria by an agreed date. This development
plan should include regular evaluation by users and stakeholders, and begin
with an equality impact assessment [EIA] of Board policies and processes
(including meetings, recruitment, induction, training and development of
Trustees) and act on the recommendations of the audit (EIA) to remove barriers
to participation”.99
Meeting this requirement to carry out an EIA is an important part of achieving
the design criterion of working from a social model of disability perspective. By
identifying barriers that need to be removed, the EIA can also, very specifically,
address some of the other design criteria, including that a ULO:
 promotes people’s human and other legal rights;
 is shaped and driven by the initiative and demand of the organisation’s
constituency
 covers all local disabled people, carers and other people who use support
either directly or via establishing links with other local organisations and
networks
127
 is non-discriminatory and recognises and works with diversity in terms of
race, religion and belief, gender, sexual orientation, disability and age
 recognises that carers have their own needs and requirements as carers
 engages the organisation’s constituents in decision-making processes at
every level of their organisation
 provides support to enable people to exercise choice and control
 is able to demonstrate that the organisation’s constituents are effectively
supported to play a full and active role in key decision-making
 identifies the diverse needs of the local population and contributes to
meeting those needs
 supports the participation of its constituents in designing, delivering and
monitoring of the organisation’s services.
Further Information
As well as working with local authority partners, more information about EIAs
can be obtained from RAISE (Regional Action and Involvement South East),
which has produced an equality and diversity toolkit with useful information and
guidance on carrying out EIAs.
“Essentially, an Equality Impact Assessment (EQIA) aims to ensure that, as far
as possible, any negative consequences for a particular group or sector of the
community are identified and eliminated or minimised. EQIAs enable an
organisation to assess and consult on the effects that a policy, strategy or
service has or is likely to have on different people, depending on factors such
as age, race, disability, gender, religion, sexual orientation and transgender …
they can alert you to any concerns about the way things are working in practice.
Equality Impact Assessments will help bring equality into the mainstream
throughout your organisation … acting as a guard against potential
discrimination. The Equality Impact Assessment should be carried out on all
proposed, revised and existing policies and the design proposals. This should
be done as part of the business planning process annually with relevance to all
equality strands.”100
128
The Role of ULO Champions
The resolution for boards asks that organisations “seek a “ULO champion” to
work with the organisation’s users, stakeholders and Board of Trustees (Board),
on fulfilling the ULO Design Criteria. This role is the key link between the Board
and staff and the users. More than one person could fill this role. Where skills
development is required, the organisation should make support for this
available, for example by arranging training or providing a buddy to work
alongside the person. All access needs should be met in relation to the role, for
example, providing a note taker or communication support at Board meetings;
ensuring meetings take place in an accessible venue. If not already a Board
member, they should be co-opted for the duration of the ULO action plan or,
preferably, be recruited as a permanent Trustee.
The Person
 A disabled service user
 Already an existing Board member or prepared to be co-opted or elected
to the Board at least for the timespan of the ULO Action Plan
 Either have or be prepared to develop the necessary skills to fulfil the
role effectively
 Familiar with the Social Model of Disability and able to explain it to
others
 Able to identify and express their own access needs and ask for them to
be met
 Able to represent the views of users to the Board clearly and assertively
 Able to work as part of a team
The Role
 Set up (if not already in existence) and facilitate a self managed user
forum.
 If it is a new forum, agree with its members a plan for its further
development
 Attend all Board meetings, report to the meeting from the forum and
report back to the forum
 Work with the organisation and in consultation with users and
stakeholders to prepare and deliver the ULO Action Plan, with reference
to the ULO criteria
 Facilitate regular evaluation of the ULO Action Plan by users and
stakeholders
 Support forum members and other users who wish to become Board
members
129
 Liaise with other Champions and mentees working with neighbouring
organisations for mutual support and information sharing
130
Example Booking and Access Needs Forms
Three sample booking and access needs forms are included in this appendix.
(1) Email version (Word tables)
(2) Text only version
(3) Printable, hard copy version
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Name of Organisation and Logo
Booking and Access Needs Form
Email Version
Event title
Venue
Date
Time
Thank you for your interest in coming to this event. Please fill in this booking
form. Click in each box to fill in your answer. (If a plain text version of the form
would be more accessible to you, please contact us at xxxxxx ) We need this
form back by xxxx. Details of where to send it are at the end.
Name:
Organisation or group (if applicable):
Contact details (phone, email, textphone etc. – please tell us how you prefer to
be contacted):
We want you to be able to take part fully. Please help us by telling us about
your access needs. Go on to the next pages and click in each box to tell us
your answer.
132
In what format do you need your information provided?
(Put a X or Yes beside the one that applies to you.)
Standard Print – 14 point like this
Large Print – 18 point like this
Braille
Easy Read Format
Electronic (Microsoft Word)
Electronic (PDF)
Electronic (RTF/plain text)
Audio CD
Audio Tape
Other (please indicate)
Do you need any form of communication support?
(Put a X or Yes beside the one that applies to you.)
Induction (hearing) loop or infra-red system
BSL Interpreter
Sign Supported English (SSE)
Palantypist (speech to text)
Lip-speaker
Note-taker
Other communication support – please tell us what you need
What other access issues do we need to know about?
(Put a X or Yes beside the one that applies to you or type details.)
I will need a wheelchair accessible toilet
I will be bringing an Assistance Dog
133
I will be bringing a Personal Assistant/Support Worker
I will need regular breaks
I will need a particular type of chair (like an office chair, a chair with arms, a soft
chair etc.)
I will need you to arrange a Personal Assistant for me
Any other access needs which we haven’t mentioned?
Food
(Put a X or Yes beside the one that applies to you.)
Vegetarian
Vegan
Low fat
Wheat Free
Halal
Kosher
Other dietary needs we haven’t mentioned?
Is there anything else we need to know to ensure you can participate fully
in this event?
Please tell us here…
When you send us back this booking form we will contact you again to say that
we have saved a place at the event for you. We will then send you more
information about where the event is being held and what the programme is.
We look forward to seeing you on xxxxx
134
Please return this form to xxx by xxxx
by email xxxx@xxx
or you can print it out and send it back by post to
xxxxxx
If you need more information you can contact xxx
Email xxx@xxx (email)
Telephone xxxx or
Text messages 07xxxxx
Fax Xxxx
135
Logo for (organisation’s name)
Name of Event
Date
Time
Venue
Booking Form and Access Needs
(text only version)
Thank you for your interest in coming to this event. Please complete this
booking form by typing or writing in the information. We need this it back by
(date). Details of where to send it are at the end.
Name:
Organisation or group you belong to (if appropriate):
Contact details (phone, email, textphone, address etc. – please tell us how you
prefer to be contacted):
We want you to be able to take part fully. Please help us by telling us about
your access needs.
In what format do you need your information?
(Please type X or Yes next to the one which applies to you.)
Standard Print (14 point sans serif)
Large Print (18 point like this – or bigger)
Braille
Easy Read Format
Electronic (Microsoft Word)
Electronic (PDF)
Electronic (RTF/plain text)
Audio CD
Audio Tape
Other (please indicate)
Do you need any of these types of communication support?
(Please type X or Yes next to the one which applies to you.)
Induction (hearing) loop
BSL Interpreter
Palantypist (speech to text transcription)
Other communication or language support – please tell us what you need
136
What other access issues do we need to know about?
(Please type X or Yes next to the one which applies to you.)
I will need a space for my car in the hotel car park (blue badge holders only –
there are only a few spaces)
I will be bringing an assistance dog
I will be bringing a Personal Assistant/Support Worker
I will need you to arrange a Personal Assistant for me
I will need regular breaks
I will need a particular type of chair (like an office chair, chair with arms, soft
chair etc.)
Any other access needs which we haven’t put in above?
Food
Vegetarian
Vegan
Low fat
Wheat free
Halal
Kosher
Other dietary needs we haven’t put in above?
Is there anything else we need to know to ensure you can take part fully in
this event?
Please tell us here…
When you send us back this booking form we will contact you again to say that
we have saved a place at the event for you. We will then send you more
information about where the event is being held and what the programme is.
We look forward to seeing you on xxxxx (date)
Please return this form to xxx by xxxx
by email to
xxx@xxxx
or you can print it out and send it back by post to
xxxx (address)
If you need more information you can contact xxxx
By email at
xx@xxx
By telephone xxxxx or
By Text message 07XXX
By Fax XXXX
137
Organisation Name and Logo
Name of Event
Date
Time
Venue
Booking Form and Access Needs
(Printable Version)
Thank you for your interest in coming to this event. Please fill in this booking
form. We need this form back by xxx. Details of where to send it are at the
end.
Name:
Organisation or group you belong to (if appropriate):
Contact details (phone, email, textphone, address etc. – please tell us how you
prefer to be contacted):
We want you to be able to take part fully. Please help us by telling us about
your access needs. Go on to the next pages and write in each box to tell us
your answer.
138
In what format do you need your information?
(Please tick or put Yes next to the one which applies to you.)
Standard Print (14 point sans serif – like this)
Large Print (18 point like this – or bigger)
Braille
Easy Read Format
Electronic (Microsoft Word)
Electronic (PDF)
Electronic (RTF/plain text)
Audio CD
Audio Tape
Other (please say what)
Do you need any of these types of communication support?
(Please tick or put Yes next to the one which applies to you.)
Induction (hearing) loop
BSL Interpreter
Palantypist (speech to text transcription)
Other communication support – please tell us what you need
What other access issues do we need to know about?
(Please tick or put Yes next to the one which applies to you.)
I will need a space for my car in the hotel car park (blue badge holders only –
there are only a few spaces)
I will be bringing an assistance dog
I will be bringing a Personal Assistant/Support Worker
139
I will need you to arrange a Personal Assistant for me
I will need regular breaks
I will need a particular type of chair (like an office chair, chair with arms, soft
chair etc.) (please tell us which)
Any other access needs which we haven’t put in above?
Food
Vegetarian
Vegan
Low fat
Wheat free
Halal
Kosher
Other dietary needs we haven’t put in above?
Is there anything else we need to know to ensure you can take part fully in
this event?
Please tell us here…
When you send us back this booking form we will contact you again to say that
we have saved a place at the event for you. We will then send you more
information about where the event is being held and what the programme is.
We look forward to seeing you on xxxxx (date)
140
Please return this form to xxx by xxxx (date)
the address to send this back by post is
xxxxx(address)
If you need more information you can contact xxx
by email at xxx@xxx
by telephone on xxxxx
by text message on 07xxxx
By fax on xxxxxxx
141
Example Training Exercises
User-led Organisations
Disability Equality Training for Management Board, Staff and
Service Users
The Hand-Out Pack
The following pages relate to a training course delivered to Management
Boards, staff and service users as part of the ULO Demonstrator Site project in
2009/10. It is an example of a course which can be delivered to organisations
wishing to develop as a user-led organisation. This Support Pack contains a
number of resources which can be used to support the course content.
The relevant Support Pack resources are:
 Meeting the Design criteria 1: The Social Model
 Meeting the Design Criteria 2: Equality, Diversity and Rights
 Meeting the Design criteria 3: The Organisation’s Constituency
 Traditional or Individual Model of Disability: A Summary
 Social Model of Disability: A Summary
 Talking the Social Model: Some tips on inclusive language and
terminology
 Disability “Etiquette”: Working More Effectively with Disabled People
 Organising Inclusive Events: Guidance Notes
 Example Booking and Access needs Form for Inclusive Events
142
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
A One-Day Course
Introduction
This one-day course is for organisations wishing to develop as user-led
Organisations (ULOs) and is targeted at members of the organisations’
management boards, staff and service user members. It will provide an
opportunity to bring these groups together to encourage them to learn from
each other about how disabled people can effectively be involved in user-led
organisations.
Aims
This course aims to:
 enable participants to explore a variety of approaches to understanding
disability as an aid to promoting a user-led approach within their
organisation;
 develop participants’ knowledge of the kind of barriers which a range of
disabled people experience and share good practice in removing those
barriers;
 explore the support needs of disabled people wishing to become trustees
and solutions to meeting these needs;
 explore effective methods of engagement with service users
 consider effective ways for disabled people to effectively participate in
user-led organisations
Learning Outcomes
At the end of the one-day course, participants will be able to:
 demonstrate their understanding of the different ways in which
discrimination against disabled people can operate in society, and in
particular in relation to getting access to services and employment;
 Identify key barriers within society, and within their organisation, that may
prevent disabled people participating on an equal basis with non-disabled
people;
 distinguish between different approaches to understanding disability and
identify ways in which using particular approaches can be fairer and more
effective;
 describe some of the ways in which a range of barriers can be removed;
143
 review their own practices when meeting and working with disabled
people, and identify particular issues for disabled people within their
organisation;
 produce individual and group action points to identify areas of possible
improvement within their own area of the organisation.
Participants will receive a programme, supporting handouts and a certificate of
attendance. The day runs from 9.30am to 4.30pm (registration and
refreshments at 9.15). Refreshments and lunch are included.
144
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
A One-Day Course
Programme
9.30
Welcome, Housekeeping and Introductions
What is Disability?
Definitions, Facts and Figures
History of Disability
Refreshment and Comfort Break
Approaches to Disability
Disability Discrimination Act in brief
Labels and Language
1.00
Lunch Break
2.00
The Challenges Faced by Disabled People in Taking an Active Role
Within Your Organisation
Meeting the support needs of disabled people Participating in Your
Organisation
Refreshment and Comfort Break
Effectively engaging with service users
Round-up
4.30
Finish
145
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
What is Disability?
So that we can consider how our organisations can become user-led by
involving our disabled service users, we need to start by considering our own
view of disability and the experiences that either we have had ourselves or
those of others close to us. In your groups, please consider and record:
What does disability mean to you?
What (if anything) is the difference between “disability” and “impairment”?
Have either you, or anyone close to you, ever faced discrimination?
146
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
The History of Disability
To help us to start to think about the issues that disabled people face when
becoming actively involved in the organisations which support them, it is helpful
to consider the different experiences of disabled people throughout history. In
your groups, consider:
How have disabled people been treated over the years? (You can talk about
current times, or as far back in history as you know about.
What famous people (living or dead, real or fictional) have been disabled
people?
147
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
The Language We Use
Language matters! If we use certain words or phrases, we can cause hurt and
offence. In your groups, consider the following words and phrases and whether
you think they are positive or negative terms.
Term
Positive
Learning difficulties
Handicapped
Able-bodied
Wheelchair user
Schizophrenic
Disabled People
Hearing impaired
Mental disorder
Special Needs
Spastic
The deaf
Non-disabled People
Partially sighted
Deaf (Capital D) or deaf (small d)
Blind
Access needs / requirements
Wheelchair bound
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Negative
Not Sure
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
Challenges Faced by Disabled People Playing a Full and Active
Role in Organisations
A key part of being a user-led organisation is involving service users in
designing, delivering and developing services. There will be different times
when disabled people would wish to get involved in different aspects of your
organisation, such as being a trustee, being a paid employee or volunteer, or
taking part in service user involvement activities. In your groups, Consider what
challenges disabled people might face when getting involved with different
aspects of your organisation.
149
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
Assertive Presentation: My Access Needs
In the context of taking an active part in an organisation which supports you,
there may be times when you want to take part in meetings or events. These
might be because the organisation wants to find out the views of its service
users on the services it provides, or it might be because you are interested in
becoming a Trustee of the organisation. In these situations you will probably
find yourself needing to explain clearly, concisely and assertively what other
people need to do to ensure you can participate fully. In other words, a
statement of your own access needs. Make some notes for yourself about the
key points you need to put across about your access needs. Now
communicate this clearly and assertively to the other person you are working
with. The other person will observe and give feedback about how effective and
assertive you were in your presentation!
150
User-Led Organisations
Disability Equality Training for Management Board, Staff
and Service Users
Effective Participation: Rights and Responsibilities
We all have rights when we participate in meetings, events and activities
(including, for example, this training or being involved with organisations which
support us. Discuss and record what you think those rights might include.
With rights come responsibilities. Discuss and record what you think are your
responsibilities when participating in meetings, events and activities.
151
It is important to recognise that on many occasions we will be working with a
diverse range of people whose life experiences are very different from our own.
For example, people from different social, cultural and ethnic backgrounds,
people of different ages, different sexual orientation, with different impairments
etc. What additional issues does this raise in relation to the rights and
responsibilities your group has discussed?
152
Meeting The Design Criteria: Quick Reference Action Points
Introduction
This section of the ULO Support Pack gives Hints and Tips on what steps you
need to take to meet each of the Department of Health’s 21 Design Criteria,
what questions you need to ask in the organisation and key issues you need to
consider. It also directs you to chapters in the Support Pack which contain
more detailed information on meeting that criterion. In line with other chapters
and resources, “DC” has been used to represent the words “Design Criteria” –
for example, “DC1” means “Design Criteria 1”.
The chapter “Essential Features of a User-led Organisation: The Department of
Health’s Design Criteria” explains the basis for each of the Design Criteria. The
action plan template in the Support Pack will help further with your
organisation’s strategy to become user led.
Some of the action points in this chapter will need to be addressed at the start
of, or very early in, the organisation’s ‘journey’ to becoming user-led. Others
are ongoing actions and issues to be dealt with over time which will reinforce
and embed the organisational changes.
This document draws on Breakthrough UK Ltd's “ULO self assessment
framework questionnaire”, work done with nine organisations by disabled
consultants in the ULO Demonstrator Site project in East Sussex during 20092010 and the more detailed chapters contained within the Support Pack. With
thanks to Breakthrough UK Ltd for making their documentation available to us.
www.breakthrough-uk.net
Design Criteria 1 to 9: The Organisation’s Values
Dc1. The organisation works from a social model of disability perspective
Relevant Support Pack Resources
 Meeting the Design Criteria 1: The Social Model
 Resolution for Boards
 Language and terminology
153
Hints and Tips
 Using the template in this Support Pack, draw up a resolution for your
Board to ratify, stating that the organisation is committed to being a Userled Organisation (ULO). This should include the commitment to using
and promoting the social model of disability.
 Review your organisation’s written values or mission statement and make
sure that they reflect the key principles of the social model.
 Review any other written material, such as policy documents and make
sure that they include the key principles of the social model.
 Check the documents for the language and terminology used – changing
how things are said to make sure they are consistent with the social
model will strengthen the message.
 In any forthcoming publications, such as your next newsletter and annual
report, publish a statement about how the organisation reflects the social
model in its work.
 Arrange training for your staff, volunteers and management board in the
social model of disability.
Dc2. The organisation promotes independent living
Relevant Support Pack Resources
 Meeting the Design Criteria 1: The Social Model
 Promoting independent living
Hints and Tips
 Make sure that everyone in your organisation has a shared understanding
of independent living. Draw up a statement or short policy document to
make sure everyone has the same understanding (sections of the chapter
on promoting independent living will help with this).
 Review your organisation’s existing commitment to promoting the concept
of independent living and how this is reflected in the way the organisation
works.
 Review the organisation’s written values or mission statement and make
sure that they reflect the key principles of independent living.
 Review any other written material, such as policy documents, and make
sure that they include the key principles of independent living.
 In any forthcoming publications, such as your next newsletter and annual
report, publish a statement about how the organisation reflects
independent living principles in its work.
154
Dc3. The Organisation Promotes People’s Human and Other Legal Rights
Relevant Support Pack Resources
 Meeting the Design Criteria 2: Equality, Diversity and Rights
Hints and Tips
 Review your organisation’s existing commitment to promoting human and
other legal rights
 Make sure that everyone in the organisation has a clear commitment to
human and other legal rights.
 Review the organisation’s written values or mission statement and make
sure that they incorporate statements on human and other legal rights.
 Review any other written material, such as policy documents, publicity
and annual reviews. Make sure that they include statements on how the
promotion of human and other legal rights are reflected in the work of the
organisation.
 Arrange training for your staff on human and other legal rights.
 Make sure that, where relevant, events and activities include specific
information on human and other legal rights.
Dc4. The organisation is shaped and driven by the initiative and demand
of its constituency
Relevant Support Pack Resources
 Meeting the Design criteria 3: The Organisation’s Constituency
Hints and Tips
 Make sure that direct service users are represented on your Board /
management committee.
 Set up a service user advisory group.
 Consider how you can involve in this advisory group those whose voices
are least heard, for example, people for whom conventional meeting
settings would be a barrier to participation.
 Review the organisation’s existing procedures for involving its service
users in how services are designed. Consider new and creative ways of
involving service users in service design. This might involve asking
service users about new ways of involving them in these discussions.
 Review any existing methods that your organisation has in place for
service users to evaluate the services they receive. Consider new and
creative ways of getting feedback from service users. This might involve
asking service users about new ways of giving feedback.
155
 Identify ways of capturing comments and suggestions from service users
that are not part of existing, formal feedback mechanisms. Find ways to
record these so they are not lost and make sure they are considered by
decision-makers
 Review any existing systems that your organisation has in place that
enable you to feed back to service users how the organisation has acted
on the comments / information they have provided to you.
Dc5. The Organisation is Peer Support Based
Relevant Support Pack Resources
 Meeting the Design Criteria 1: The Social Model
 Peer support
Hints and Tips
 Have in place formal systems and / or structures for peer support, peer
advocacy or mentoring in your organisation. This means facilitating users
of your services to support other users to help themselves and make
choices about how they want to receive any support they need.
Suggestions for ways of facilitating peer support in your organisation are
described in more detail in the peer support chapter, and include the
following:
 Involve service users, volunteers and members in discussions about the
idea of peer support and how they would like to see it operate formally
within the organisation.
 With those constituents, draw up a simple set of guidelines so that people
understand what peer support is and what it is not, and what both parties
can expect from each other.
 Provide regular training or coaching for people who are interested in
taking part in peer support, peer advocacy or self advocacy.
 Provide support or ‘supervision’ for those who are in the main supporting
role in peer support partnerships
 Encourage peer support partnerships regularly to reflect on what they
have learned from working together. Have ways of capturing and
recording this learning from peer support partnerships so that it can be
shared more widely in the organisation.
 Consider whether any of your services are delivered by the people the
organisation works with or represents. Have in place a strategy for future
recruitment to meet this target and regularly monitor its progress.
156
Dc6. The Organisation Covers all Local Disabled People, Carers and Other
People who use Support Either Directly or Via Establishing Links with
Other Local Networks and Organisations
Relevant Support Pack Resources
 Meeting the Design Criteria 4: Carers, Networks, Partnerships
 Meeting the Design Criteria 2: Equality, Diversity and Rights
Hints and Tips
 Remember, everyone that uses your organisation’s services will have a
range of circumstances and needs; they will not simply have one
impairment.
 Make sure your organisation provides formal or informal support and/or
services to people other than those in your primary user group. For
example, if your organisation is set up to work with people with a
particular impairment, make sure that they can access services relating to
other impairment needs.
 Make sure you are able to signpost people to other organisations where
you are not able to provide services directly to them, and that these
include organisations representing diverse communities
 Make sure that you have formal or informal systems for referral to other
services and/or functions in your organisation.
 If carers are also involved in your organisation, have systems in place for
identifying and dealing positively with any potential conflicts of interests
between carers and disabled people / people who use support.
 Review local, county, regional, national or international bodies /
associations/forums related to your work to which your organisation
belongs. Encourage your organisation to join any others that are
appropriate.
 Make contact with organisations and networks who work with different
user groups to your own (for example, younger people, people from Black
and Minority Ethnic communities etc).
 If issues arise affecting disabled people, carers or others who use support
from those other user groups, explore the possibility of collaboration over
a newsletter article, press release or event (for example, sporting
opportunities for young disabled people, access to mental health support
services by people from Black and Minority Ethnic communities).
 Explore opportunities for joint funding with organisations working with
people who are under-represented in your own organisation.
 Make sure that you include the links you have with organisations
representing different user groups than your own in any formal
documentation.
157
Dc7. The Organisation is Non-discriminatory and Recognises and Works
with Diversity in Terms of Race, Religion and Belief, Gender, Sexual
Orientation, Disability and Age
Relevant Support Pack Resources
 Meeting the Design Criteria 2: Equality, Diversity and Rights
 Meeting the Design Criteria 1: The Social Model
Hints and Tips
 Review the organisation’s written equal opportunities / antidiscrimination/diversity and equality policy and amend this if necessary to
reflect commitment to this criterion.
 Review the organisation’s written materials and resources to make sure
that inclusive and non-discriminatory language is used consistently.
 Review any current monitoring systems that are in place which evaluate
the take-up of services. Check that they are appropriate for different
groups of your existing users or potential users.
 Have monitoring systems in place in respect of employment, membership
of the Board or volunteers. Regularly review the results of this
monitoring.
 Make sure the Board regularly receive reports based on the results of the
above monitoring. Take action to address under-representation of
particular groups in any of these areas.
 Make sure that all decision-makers in your organisation fully understand
legal obligations in relation to equality legislation.
 Make sure staff, volunteers and supporters in your organisation
understand their own legal obligations in relation to equality legislation.
 Provide diversity and anti-discrimination training for your organisation’s
staff, management board and volunteers.
 Review any formal requirements that your main funders have relating to
how you make sure your services comply with equality legislation and
how you promote diversity. Make sure the organisation meet these
requirements.
 Carry out specific activities to target ‘hard to reach’ users or people whose
voices are seldom heard.
 Have regular ‘us’ and ‘them’ activities for Board members, staff,
volunteers and service users which help make sure the organisation is not
excluding people from different communities or sections of the
community. Examples are activities which get people to suggest what are
the social and personal characteristics of people regularly involved with
the organisation (who is ‘us’). This will help clarify who ‘belongs’ to the
organisation and therefore who might feel left out (who is ‘them’). These
could be regular events just for this purpose or such activities could be
included in other events.
158
Dc8. The Organisation Recognises that Carers Have Their Own Needs and
Requirements as Carers
Relevant Support Pack Resources
 Meeting the Design Criteria 4: Carers, Networks, Partnerships
Hints and Tips
 Members of your organisation may be carers themselves.
 Review whether your organisation does any work specifically with carers.
 Make sure you listen to carers’ views so they are taken into account in the
way you run your services.
 Draw up specific procedures and documentation outlining how the
organisation addresses the needs and requirements of carers.
 Draw up specific procedures and documentation outlining how the
organisation deals with:
a) common interests (between users and their carers)
b) conflicts of interest and differences between users and their carers
 Make sure that the needs of carers are reflected in your organisation’s
mission/values statement(s).
Dc9. The Organisation Engages its Constituents in Decision-Making
Processes at Every Level of the Organisation (see also Dc4)
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
Hints and Tips
 Draw up a chart or pictorial diagram outlining the organisation’s decisionmaking processes and how users can participate in these
 Review the current representation that service users have in the
organisation at:
a) management committee or Board level
b) employed staff (including management level)
c) volunteers and others involved with the organisation

Identify the priority area(s) for action (where service users are least
represented) and develop an initial action plan to address the underrepresentation
 Review how the organisation communicates information about how
service users are enabled to be involved in decision making processes
 Carry out an audit of skills necessary at different levels of the organisation
to identify where support, training and mentoring might be needed to
equip service users to play a more effective role in decision-making
159
 Provide mentoring training for individuals with different roles in the
organisation who have skills (and willingness) to coach and mentor others
into new roles
 Provide a variety of types of participation training or activities for service
users, concentrating on the social model of disability, skills for effective
meetings and working in groups and effective participation in decisionmaking processes
160
Design Criteria 10 to 21: The Organisation’s Characteristics
Dc10. The Organisation Provides Support in a Way Which Enables
Disabled People, Carers and Other People Who use Support to Exercise
Choice and Control
Relevant Support Pack Resources
 Meeting the Design Criteria 1: The Social Model
Hints and Tips
 Set up a formal assessment process for users of your services
 Make sure that your assessment process has a formal “self assessment”
section where service users identify their own needs
 Review the forms or documentation for the assessment and selfassessment processes to make sure the language is consistent with the
social model of disability
 Make sure that service users self-define their needs and how these
should best be met
 Make sure that procedures for carrying out service user reviews enable
service users to exercise choice and control about the decisions directly
affecting them
 Have a written statement stating how your users can exercise choice and
control in the way the organisation works and through the services it
provides
 In conjunction with service users, have systems to measure or evaluate
the impact or outcomes achieved by promoting choice and control
 Make sure your promotional information about the services and support
the organisation provides refer to the individual’s right to exercise choice
and control?
Dc11. The Organisation is a Legally Constituted Organisation
Relevant Support Pack Resources
 What is a ULO?
 Meeting the Design Criteria 5: A Sustainable Organisation
Hints and Tips
 If the organisation is just starting up, consider what will be an appropriate
structure for the organisation, i.e. charity, Company Limited by
Guarantee, Community Interest Company, social enterprise, Charitable
Incorporated Organisation)
161
 Make sure your constitution reflects the principles of the social model and
does not contain any discriminatory clauses
 Provide regular training for Boards and management staff in the different
aspects of running a sustainable organisation, especially in legal and
financial matters
 Provide an easier-read, jargon free version of the organisation’s
constitution
Dc12. The Organisation Has a Minimum of 75 per cent of Voting Members
on the Management Board Drawn from the Organisation’s Constituency
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
Hints and Tips
 The organisation should work towards having 75% of its voting members
on the management board drawn from its constituency, but should have
at least 51%, i.e. a majority
 Review how many of your Board of Trustees or Management Committee
represent your service user group
 Advertise widely to service users that you are seeking Trustees or
Directors from the service users of the organisation, including a statement
about the organisation’s commitment to involving service users at every
level of its decision-making processes
 Make sure your recruitment processes are free of any discriminatory
barriers – an equality impact assessment or audit can help identify these
 Draw up role descriptions for the various positions on your Management
Board, including a list of the skills required
 Carry out an audit of skills necessary to identify where support, training
and mentoring might be needed to equip service users to become
Trustees or Directors
 Where service users wish to become Trustees or Directors but do not
have all the skills needed, develop opportunities for a more experienced
board member to mentor or buddy a less experienced member or for
those interested to ‘shadow’ a Trustee or Director
 Review how the duties of the Board or Management Committee are
carried out and consider ways in which activities might be made more
inclusive and accessible to people who reflect your service users (for
example, more use of smaller sub-groups to carry out some areas of
work)
 Consider ways in which current or outgoing Trustees or Directors might
continue to contribute to the organisation, for example by helping to
develop the skills and confidence of potential future members of the
162
Board, through involvement in ‘role play’ type activities in participation
training or similar
Dc13. The Organisation is Able to Demonstrate that its Constituents are
Effectively Supported to Play a Full and Active Role in Key Decisionmaking (see also Dc4, Dc9 and Dc10)
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
Hints and Tips
 Review the training and support your organisation currently provides to
enable service users to be involved in decision-making
 Carry out an audit of skills necessary at different levels of the organisation
to identify where support, training and mentoring would help service users
to play a greater role in decision-making processes
 Provide mentoring training for individuals with different roles in the
organisation who have skills and are willing to coach and mentor others
into new roles or buddy those taking on new responsibilities
 Review how the organisation meets the access needs (including
information and communication) of all those involved in decision making
processes, and assess what changes are necessary to involve those with
other support needs
 Carry out an impact assessment of the organisation’s current processes
for decision-making to identify barriers to wider participation of its
constituents. Develop more inclusive activities, where appropriate
 Provide a variety of types of participation training for service users,
concentrating on the social model of disability, skills for effective
meetings, working in groups and effective participation in decision-making
processes
 Consider ways in which current or outgoing Trustees or Directors might
help develop the skills and confidence of potential future members of the
Board, such as by involving them in coaching, mentoring, buddying or
‘role play’ type activities in participation training or similar.
163
Dc14. The User-led Organisation has a Clearly Defined Management
Structure
Relevant Support Pack Resources
 Meeting the Design Criteria 5: A Sustainable Organisation
Hints and Tips
 Produce an organisational staffing chart
 Provide copies of the organisational staffing chart to all staff, service
users, carers and supporters
 Publish documentation to communicate to all stakeholders the
management structure and decision-making processes of the
organisation
 Make sure that this documentation is available in a range of accessible
formats (including easy read).
Dc15. The Organisation has Robust and Rigorous Systems in Place for
Running a Sustainable Organisation (e.g. financial
management/contingency planning)
Relevant Support Pack Resources
 Meeting the Design Criteria 5: A Sustainable Organisation
Hints and Tips
 Contact your local CVS to discuss appropriate systems for running a
sustainable organisation
 Review your current induction programme for new Trustees or
management committee members to Make sure that it fills the knowledge
and skills gaps of new (and potential) Board members
 Provide training for existing and new management board members on
governance issues
 Provide appropriate training for your managers on running a sustainable
organisation
 Have in place formal processes for having a dialogue with stakeholders
and funders about what you might do and/or might require to become
sustainable and secure a long term future for the organisation
 Review your organisation’s current financial and strategic plan
 Have a written annual business plan
 Make sure that formal minutes are taken of meetings where decisions are
made about the organisation’s resources and future plans
164
 Review your organisation’s approach to supporting, managing and
retaining existing staff. Consider ways in which the organisation might
enhance its reputation for being an ‘employer of choice’, thereby retaining
the loyalty and commitment of staff (and volunteers) and contributing to
the sustainability of the organisation
 Offer staff (and/or volunteers) who leave an “exit” interview in order to get
feedback about their experience of the organisation. Use this to identify
any areas for improvement which may help retain employees and
volunteers in future, and contribute to the sustainability of the organisation
 Have in place a risk management plan
Dc16. The Organisation is Financially Sustainable and Independent of
Central Government Funding (see also Dc10 and Dc11)
Relevant Support Pack Resources
 Meeting the Design Criteria 5: A Sustainable Organisation
Hints and Tips
 Review any existing financial management policies and procedures that
you have in place for the running of the organisation and contact your
local CVS to make sure these meet up-to-date requirements
 Make sure that your accounts are either independently examined or
audited as appropriate in time for them to be presented at your Annual
General Meeting
 Make sure that at least a summary of your accounts is available in
alternative formats to meet the needs of those attending your AGM
 Produce individual budget plans for each area of work in which you are
involved
 Make sure that the organisation has a mix of funding from different
sources to improve its financial sustainability and stability
 Make sure you include full cost recovery in any budgets you draw up for
funding applications
165
Dc17. The Organisation has Paid Employees, Many of Whom Reflect the
Organisation’s Constituents
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
Hints and Tips
 Produce a chart identifying the jobs that are currently filled by people
reflecting the organisation’s constituency and at what level they are
employed within the organisation
 Review any current equality monitoring systems that your organisation
has in place for paid staff and volunteers
 Review basic employment practice to make sure that all existing paid
employees have a Contract of Employment and job description
 Make sure that all existing and new posts have job descriptions, person
specifications and competency frameworks which demonstrate best
practice in employment and equality law, and which signal the
commitment to employing people who reflect the organisation’s
constituency
 Carry out a staff survey to find out whether any of your employees have
been, or are still, service users and whether they experience any barriers
to working in the organisation
 Review the organisation’s existing recruitment procedures and make sure
they cater for the access and support needs of the organisation’s service
user group
 When advertising any job vacancies, include a statement on the
organisation’s wish to seek applications from people in its service user
group
 Review the organisation’s career development procedures and make sure
that they provide equality of opportunity for different sections of the
community
 Review the organisation’s existing procedures for making reasonable
adjustments for all employees (e.g. access and support needs, and Make
sure that staff and managers are aware of the Access to Work scheme
etc.)
 Provide regular training for your existing staff
 Make sure that staff at all levels of the organisation feel well supported in
their posts by having clear leadership, strong management and
supervisory support
 Review your organisation’s approach to supporting, managing and
retaining existing staff. Consider ways in which the organisation might
enhance its reputation for being an ‘employer of choice’, thereby retaining
the loyalty and commitment of staff (and volunteers) and contributing to
the sustainability of the organisation
166
 Make sure that staff (and / or volunteers) who leave the organisation have
an “exit” interview in order to get feedback about their experience of the
organisation, and to identify any areas for improvement which may help
retain employees and volunteers in future
 Encourage people from within your organisation’s principal user group to
take up work experience placements if they are interested in employment
in the organisation
 Provide training and coaching, mentoring or buddying support for service
users/volunteers who are potential employees
 Keep a record of external sources of expertise and training providers that
may be appropriate for use by the organisation
Dc18. The Organisation Identifies the Diverse Needs of the Local
Population and Contributes to Meeting Those Needs (see also Dc7)
Relevant Support Pack Resources
 Meeting the Design Criteria 2: Equality, Diversity and Rights
Hints and Tips
 Explore opportunities for participating in regional or local service planning
and / or commissioning meetings to enable your organisation to contribute
to developing community plans to best meet the diverse needs of your
local community
 Make sure that service users, volunteers and supporters of the
organisation are made aware of local (and national) consultations and
involvement processes, and where possible organise specific events to
facilitate responses to such consultations or input to involvement
processes
 Review the organisation’s strategy and/or business plans to identify any
changes that may be required to enable the organisation to contribute to
meeting the diverse needs of local people
 Maintain an awareness of current topics relevant to specific groups in the
community which are currently under-represented in the organisation
 Develop strong links with other local groups and organisations of minority
communities to make sure the organisation represents the views and
issues of those whose voices are seldom heard
 Develop mechanisms to make sure that feedback from service-users
(whether from formal feedback systems or informal comments and
suggestions) is recorded and readily available to inform local service
planning activities
167
Dc19. The Organisation is Accountable to its Constituents and
Represents Their Views at a Local Level (see also Dc8, Dc9 and Dc10)
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
 Meeting the Design Criteria 6: Commissioning
Hints and Tips
 Review and audit the organisation’s membership system (if it has one)
and who has voting rights
 Make sure that the organisation’s membership system gives its service
users full voting rights
 If you wish other supporters of the organisation to be members, consider
enrolling them as associate members with fewer voting rights (for
example, one vote per organisation rather than one per individual)
 Review the organisation’s procedure for service users to make
complaints, raise concerns and/or provide compliments
 Involve service users, voting members, staff and volunteers in drawing up
business plans and prioritising exercises
 Give service users and members an opportunity to meet regularly with the
Board of Trustees or Management Committee to discuss and report on
the organisation’s direction and development
 Provide opportunities for Trustees and management staff to answer
questions on the annual review and accounts and similar organisational
documents
Dc20. The User-led Organisation Can Demonstrate the Participation of its
Constituents in Designing, Delivering and Monitoring the Organisation’s
Services (see also Dc10)
Relevant Support Pack Resources
 Meeting the Design Criteria 3: The Organisation’s Constituency
Hints and Tips
 Have in place formal processes to enable you to identify any gaps in
service provision and how to address them
 Make sure these processes genuinely strengthen levels of participation of
different groups of service users/the people you support
 Involve service users, voting members, staff and volunteers in drawing up
business plans and prioritising exercises
 Develop mechanisms to make sure that feedback from service-users
(whether from formal feedback systems or informal comments and
168
suggestions) is recorded and readily available to inform the organisation’s
own service planning activities
 Make sure that involvement activities about potential new services (or
reviewing existing services) are inclusive and accessible. This may mean
carrying out a range of different types of activity rather than only
conventional meetings, to enable more service users to input ideas or
provide feedback
DC21. The Organisation Works with Commissioners to Improve
Commissioning and Procurement
Relevant Support Pack Resources
 Meeting the Design Criteria 6: Commissioning
Hints and Tips
 Take all opportunities to contribute to local authority / public sector body
commissioning procedures
 Have a structured approach to working with different commissioners of
services
 Explore training opportunities and / or other resources to develop skills
and knowledge around commissioning and procurement
 Take all opportunities available to develop consortium or partnership
applications for bidding for new work
 Make sure that the organisation makes use of the experience and
resources of other ULOs (such as through the National Centre for
Independent Living website) which have developed work on inclusive
commissioning, in order to influence local commissioners on current best
practice
 Make sure the organisation feeds back to commissioners the importance
of building in user-led principles to the commissioning process, in
particular highlighting some of the added-value which a ULO can bring to
the tendering process (see the Meeting the Design Criteria 6 Chapter)
 Make sure that the organisation talks to commissioners about the
accessibility of current tendering processes, for example whether
timescales are realistic, the need to minimise jargon and provide
documentation in plain language and that requirements for liability
insurance are legitimate and proportional to the service.
169
Template Action Plan for Developing User-Led Organisations
In the Template Resolution for Boards in this ULO Support Pack, the Board is
asked to draw up a timed and measurable action plan for your organisation to
work towards becoming a ULO. This template provides some examples of tasks
which you might include in such an action plan, with suggested resources and
appropriate people to lead on each action.
Objective
Action(s)
Needed
Agree and
sign
Resolution
Resource
Requirement(s)
Copies of
resolution in
formats as
necessary
Recruit ULO
Champions
Identify one or
two disabled
users to fulfil
the role
Adopt social
model
Revise
constitution
Role description
in Support Pack
Names of
mentees and
user forum
leaders
Support Pack
information
Commit to
becoming
user led
Demonstrate
commitment
to social
model
Provide info
and/or training
in social
model for staff
& users
Demonstrate Update or
commitment create equal
to equality & opportunities
diversity
policy
Support Pack
information.
Who Will
Organise
Board –
with
contextual
info from
mentee/
user
champion
and/or
consultant
CEO &
Board
ULO
champion
with mentee
support to
use Support
Pack to find
info
ULO
champion &
mentee
Time allocated
for staff training
Existing policy or CEO & staff
template for new
one
170
By
When
Notes
Objective
Enable user
involvement
to support
progress
towards
being user
led
Action(s)
Needed
Set up a user
forum or
review
existing
groups
Address
access issues
for
stakeholder
groups
Enable users Carry out an
to become
EIA of Board
Board
policies and
members
processes
Resource
Requirement(s)
Time & support
for ULO
champion
Venue for
regular meetings
Who Will
By
Organise
When
ULO
champion
with support
from
mentee
Admin support
EIA briefing from CEO & staff
Support Pack
with
champion &
mentee
support
Implement
recommendati
ons
Support new
Board
members with
induction
training
171
Notes
Appendix 3: Useful Resources
Sources of Support for Developing User-Led Organisations
Support for Provision of Material in Accessible Formats
Communication Support for People with Hearing Impairments
Neal Communication Agency (NCA)
Address: Cambridge House, 16-18 Wellesley Road, Croydon CR0 2DD
Telephone: 0870 163 0556
Textphone: 0870 163 0557
Fax: 0870 622 0987
SMS: 0778 620 2548
E-mail: bookings@neal.uk.com
Website: http://www.neal.uk.com
NCA provides a range of communication support services. These include
British Sign Language / English interpreting, lipspeaking, deafblind interpreting,
deaf / relay interpreting, speech-to-text reporting and note-taking. As well as
the various contact methods listed above, services can be booked using their
online booking form via their website.
RNID Communication Support Services
Address: RNID Communication Services London and the South East, The
Plaza, 100 Old Hall Street, Liverpool L3 9QJ
Telephone: 0845 685 8000
Textphone: 0845 685 8001
Fax: 0845 685 8002
Email: communication.services@rnid.org.uk
Website: http://www.rnid.org.uk
RNID provides a variety of communication support services including British
Sign Language/English interpreters and Electronic Notetakers. These services
can be booked through their online booking form or by contacting one of their
local communication support offices.
172
Producing Information in Accessible Formats for People with
Visual Impairments
United Kingdom Association for Accessible Formats (UKAAF)
Address: PO Box 127, Cwmbran NP44 9BQ.
Telephone: 0845 60 85223 Fax: 0845 60 85224
E-mail: enquiries@ukaaf.org
Website: http://www.ukaaf.org
UKAAF provides information and advice to anyone wishing to produce
information in accessible formats for visually impaired people such as Braille,
large print and audio. This includes a directory of organisations who produce
material in accessible formats.
Producing Information in Easier Read Formats for People with
Learning Difficulties
People First
Address: Unit 3.46 Canterbury Court, Kennington Park Business Centre, 1-3
Brixton Road, London SW9 6DE
Telephone: 020 7820 6655
E-mail: general@peoplefirstltd.com
Website: http://www.peoplefirstltd.com
People First provides an Easy Read Service to make reports, forms and
publications accessible to disabled people with learning difficulties.
Interpretation and Translation into Other Languages
Vandu Language Services (VLS)
Address: 36 St Nicholas, Lewes, East Sussex BN7 2JZ
Telephone: 01273 473986 Fax: 01273 488701
E-mail: info@vlslanguages.com
Website: http://www.vlslanguages.com
Vandu Language Services (VLS) (originally Southeast Interpreting and
Translation Services) provides a wide range of language services to both the
public and private sector and work with more than 1,500 highly trained linguists
who collectively speak over 100 languages. Services include translation,
interpreting and training
173
Local Support for Disabled People
East Sussex Disability Association (ESDA)
Address: 1 Faraday Close, Hampden Park, Eastbourne, East Sussex BN22
9BH.
Telephone: 01323 514500
SMS: 07564932445
Textphone: 18001 01323 514500 (via Typetalk)
E-mail: info@esda.org.uk
Website: http://www.esda.org.uk
ESDA is an organisation which provides a wide range of services aimed at
helping all disabled people in East Sussex to achieve independence and control
over their lives. The majority of ESDA's trustees and members are disabled
people, and the organisation also employs a large number of disabled people
on its staff.
ESDA is able to provide a range of training and consultancy services to
organisations developing as ULOS, including disability equality training for
Management Board and staff members and participation training for service
users.
East Sussex Association of Blind & Partially Sighted People
(ESAB)
Address: ESAB, West End, Herstmonceux, East Sussex BN27 4NH.
Telephone: 01323 832252.
E-mail: info@eastsussexblind.org
ESAB provides a range of services to enhance the lives of people with sight
loss, in order to increase their confidence and knowledge so that they can make
informed choices about their lifestyle and care.
They aim to promote independence, reduce social isolation and increase
opportunities for inclusion and raise awareness with communities and policy
makers.
ESAB works across East Sussex with the exception of the towns of Eastbourne
and Hastings, which have their own organisations which work with people with
sight loss. All three organisations work closely under the umbrella of East
Sussex Vision Care. ESAB also work in Hove and Portslade and offer a home
visiting service in Brighton, Hove and Portslade only.
174
East Sussex Hearing Resource Centre (ESHRC)
Address: 8 St Leonards Road, Eastbourne, East Sussex BN21 3UH
Telephone: 01323 722505
E-mail: mail@eshrc.org.uk
Website: http://www.eshrc.org.uk
East Sussex Hearing Resource Centre (ESHRC) provides a range of services
to Deaf, deafened and deafblind people. The majority of staff and volunteers
have a hearing loss. Services include: communication support such as
lipreading, sign language and cued speech, advocacy and outreach.
Headway Hurstwood Park
Address: Headway Hurstwood Park, Headway House, Jackies Lane, Newick,
East Sussex BN8 4QX
Telephone: 01825 724323
Fax: 01825 724363
E-mail: gerry.harris@headway-hp.co.uk
Website: www.headway-hp.org.uk
Headway Hurstwood Park provides support, advice, education and
rehabilitation to anyone affected by acquired brain injury. As well as clients
themselves, this includes their families, carers, friends, any organisations that
they are or have previously been involved with, or their employers.
Mind
Wealden, Eastbourne and Lewes MIND
Telephone: 01323 648836
E-mail: info@welmind.org.uk
Website: http://ww.welmind.org.uk
Hastings And Rother MIND
Telephone: 01424 442435
E-mail: activ8network@hotmail.co.uk
Website: http://ww.activ8network.org.uk
Mind helps people to take control over their mental health. They do this to
make it possible for people who experience mental distress to live full lives, and
play their full part in society. They provide information and advice, training
programmes, Mind in your area, grants and more.
175
South of England Advocacy Projects (SEAP)
Address: 7th Floor, Cavendish House, Breeds Place Hastings, East Sussex
TN34 3AA
Telephone: 0330 440 9000
E-mail: info@seap.org.uk
Website: http://ww.seap.org.uk
SEAP delivers a wide range of advocacy and related services to a variety of
client groups. The purpose of the organisation is to ensure that the views,
wishes and feelings of those using health and social care services are
promoted to service providers, and to provide advocacy support to individuals
or groups who wish to resolve specific issues. Their three projects are:
 MY CHOiCE Advocacy Services – working with clients with a range of
learning disabilities, including complex and profound communication
difficulties, those who intermittently lack capacity and those with acquired
brain injury.
 Xpress works with children and young people up to the age of 21,
including those with learning disabilities and mental health issues. They
have considerable experience in working with young people who are
Looked After by the local authority and those who live in secure
accommodation.
 Mental Health Advocacy (MHA) provides services to people
experiencing mental health issues, including those with profound and
enduring mental health issues.
National Organisations Supporting Disabled People
Change
Address: Unit 41, Shine, Harehills Road, Leeds LS8 5HS
Telephone: 0113 388 0011
Fax: 0113 388 0012
E-mail: info@change-people.co.uk
Website: http://www.changepeople.org.uk
CHANGE is a leading national equal rights organisation run by and for people
with learning disabilities. They work with people and organisations to ensure
that people with learning disabilities have the same rights, choices, information
and services as everyone else.
176
Deafblind UK
Address: Signet Road, Hampton, Peterborough PE7 8FD
Telephone: 01733 358100
Fax: 01733 358356
E-mail: conferences@deafblind.org.uk
Deafblind UK provides a range of services to assist deafblind people, their
support assistants and other professionals. These include training in
communication and rehabilitation skills, a free 24 our helpline, a regional
network of staff and volunteers, a varied leisure programme and a range of
publications in different formats.
Royal National Institute of Blind People (RNIB)
Address: 105 Judd Street, London WC1H 9NE
Telephone: Tel: 020 7388 1266
Telephone (Helpline): 0303 123 9999
Fax: 020 7388 2034
Website: www.rnib.org.uk
RNIB provides a wide range of products and services related to supporting
people with sight loss, their families and friends, as well as employers and
service providers.
Royal National Institute of Deaf People (RNID)
Address: Head Office, 19-23 Featherstone Street, London EC1Y 8SL
Telephone: 020 72968000
Textphone: 020 72968001
Fax: 020 72968199
Information Line (Voice): 0808 8080123
Information Line (Text): 0808 808900
E-mail: infomationline@rnid.org.uk
Website: http://ww.rnid.org.uk
RNID works to improve the lives of deaf and hard of hearing people, by
providing a range of services, campaigning and lobbying, raising awareness of
deafness and hearing loss and through social, medical and technical research.
177
National Organisations Supporting User-led Organisations
Disability Lib Alliance
Address: Disability LIB, 6 Market Road, London N7 9PW. Phone: 0844 800
4331
Telephone: 0844 800 4331
Mobile (SMS): 07967 185752
E-mail: contact@disabilitylib.org.uk
Website: http://www.disabilitylib.org.uk/
Disability LIB is an alliance of 7 organisations offering capacity building support
and advice to user-led organisations in England using rights based principles
and business skills, at a time of financial crisis and political opportunity.
Disability LIB recognises that user-led organisations play a vital role in
challenging disablism and discrimination. They value the diversity of user-led
organisations and support their development as a specific and distinct sector
within both local communities and wider society.
National Centre for Independent Living (NCIL)
Address: Unit 3.40, Canterbury Court, 1-3 Brixton Road, London SW9 6DE
Telephone: 020 75871663
Advice Line: 0845 0264748
Website: www.ncil.org.uk
NCIL is a not for profit organisation that is run and controlled by disabled people
whose membership is made up of individual disabled people and organisations.
NCIL’s primary aim is to promote independent living. This means disabled
people having control and choice over their own lives. To do this NCIL give
support and information around direct payments and Individual Budgets, tries to
make sure that disabled people can get accessible information in these
subjects and provides newsletters and a range of other publications.
Shaping Our Lives
Address: BM Box 4845, London WC1N 3XX
Telephone: 0845 2410383
Typetalk: 18001 0845 2410383
E-mail: information@shapingourlives.org.uk
Website: www.shapingourlives.org.uk/contact.html
Shaping Our Lives National User Network’s vision is of a society which is equal
and fair where all people have the same opportunities, choices, rights and
178
responsibilities – a society where people have choice and control over the way
they live and the support services they use.
Shaping Our Lives aims to:
 support the development of local user involvement that aims to deliver
better outcomes for service users
 give a shared voice to user controlled organisations
 facilitate service user involvement at a national level
 work across all user groups in an equal and accessible manner
 improve the quality of support people receive
 enable groups to link to other user-controlled groups
 develop links with world wide international user-controlled organisations.
Shaping Our Lives has a Management Group, a National User Group and also
network and associate network members.
http://www.shapingourlives.org.uk/downloads/general/structure_diagram.doc
Shaping Our Lives Network (SOLNET)
Website: http://www.solnetwork.org.uk/
The Shaping Our Lives Network is run by Shaping Our Lives (see above). It is
a website which provides information about what service user organisations are
doing and also what non-service user organisations are doing for service users
This website will provide a way for service user organisations, service users
and other people who are interested to :
 support the development of local user involvement that aims to deliver
better outcomes for service users
 be a place where user controlled organisations can voice their views and
concerns.
 give information about and support service user involvement at a national
level
 be open to all user groups in an equal and accessible manner
 enable groups to link to other user controlled groups
 develop links with world wide international user controlled organisations
The website reflects the priorities and needs of its member organisations. It
also encourages user controlled organisations to learn both from each other
and from wider best practice through the database, the online forum and other
content
179
Local Organisations Providing Business Support
1066 Enterprise
Address: Summerfields Business Centre, Bohemia Road, Hastings, East
Sussex
Telephone: 01424 205500
Fax: 01424 205501
E-mail Sharon.Fitzhugh@1066enterprise.co.uk.
Website: www.1066enterprise.co.uk
1066 Enterprise is the enterprise agency for Hastings and Rother, and also the
Chamber of Commerce for Hastings and St Leonards. They are the main point
of contact for business support services in Hastings and Rother and have
expanded to embrace the important roles of Town Centre Management, and to
promote links between education and business through their Business Broker.
Action In Rural Sussex (AirS)
Address: Sussex House, 212 High Street, Lewes, East Sussex BN7 2NH
Telephone: 01273 473422
Fax: 01273 483109
E-mail: info@ruralsussex.org.uk
Website: www.ruralsussex.org.uk
AirS aims to co-ordinate and support the work of both statutory and voluntary
agencies working for and on behalf of rural areas of Sussex. It provides an
independent and expert support service focusing on the provision of better
services, business opportunities, community development and care, enterprise
and village shops, social inclusion and issues affecting children and young
people. They work to reduce disadvantage in rural areas, increase the capacity
of rural communities and be an independent advocate that champions rural
community life.
Eastbourne And District Enterprise Agency Ltd (EDEAL)
Address: EDEAL Business Centre, Dittons Business Park, Dittons Road,
Polegate, East Sussex BN26 6HY
Telephone: 0844 2640390 Fax: 01323 489801
E-mail: info@edeal.org.uk
Website: www.edeal.org.uk
EDEAL provides access to free, confidential and impartial business support
services to new and small businesses in East Sussex and is the local deliverer
of Business Link start-up services in Sussex and Kent. Additionally they can
180
provide affordable consultancy, training and mentoring to all business sectors,
including social enterprise, through their network of experienced and accredited
associates.
Enterprise Agency, Brighton, Hove and Lewes (EABHL)
Address: 23 Old Steine, Brighton BN1 1EL
Telephone: 01273 666800
Fax: 01273 666802
E-mail: info@bnbusiness.co.uk
Website: www.bnbusiness.co.uk
EABHL provides support to business start-ups and existing small businesses.
Advice on all aspects of setting up and developing your business is available
through training. 1-to-1 advice is also available to trading companies at a
heavily subsidised rate.
Sussex Enterprise
Address: Greenacre Court, Station Road, Burgess Hill, West Sussex RH15
9DS
Telephone: 0845 67 888 67
Fax: 01444 259255
E-mail: info@sussexenterprise.co.uk
Website: www.sussexenterprise.co.uk
Sussex Enterprise is an organisation that supports and represents businesses
in Sussex, and is owned by Sussex businesses through their membership.
They provide practical business support, training, information and advice to
help businesses develop, grow and profit.
181
Useful Resources
Putting People First: Working Together with User-led Organisations
http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolic
yandguidance/dh096859
This document outlines the benefits to Las of working with ULOs, how Las can
take advantage of these benefits and how the Department of Health supports
ULOs. It is aimed at Directors of Adult and Children’s Social Services,
commissioners and other officers working with ULOs or the third sector.
A Guide to Getting Direct Payments From Your Council: A Route to
Independent Living
http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolic
yandguidance/dh104845
The aim of this guidance is to assist local Councils in making Direct Payments.
Together with the annexes, it also provides guidance on how local Councils
might manage and administer Direct Payments. It replaces Direct Payments
Guidance… Community Care, Services for Carers and Children’s Services
(Direct Payments) Guidance issued in 2003. The guidance has been updated
to reflect recent legislation changes that extend Direct Payments to previously
excluded groups. An Impact Assessment and Equality Impact Assessment
have been carried out.
Working in a Consortium: A Guide to Third Sector Organisations Involved
in Public Service Delivery
http://www.cabinetoffice.gov.uk/media/107235/consortium%20guide%2ofinal.pd
f
Guide for staff and directors of third sector organisations who may be
considering, or already involved in, developing a partnership to deliver a public
service contract.
Office of Disability, Right to Control
http://www.officefordisability.gov.uk/working/right-to-control.php
New milestone for Putting People First
http://www.dhcarenetworks.org.uk/news/newsitem/?cid=6250
In September 2009 ADASS, the Local Government Association and the
Department of Health agreed a set of milestones for local Councils. These help
Councils to be clear about what good progress implementing Putting People
First will look like. One milestone is that by April 2011 30% who are eligible for
social care have taken up Personal Budgets. Councils will get support from
regional and national organisations to help them achieve their milestones.
182
Independent Living Strategy
http://www.officefordisability.gov.uk/working/independentliving/strategy.php
In July 2006 the Independent Living Review was set up to develop a five-year
strategy for independent living. The strategy sets out a five-year plan that
seeks to realise the government’s aim that all disabled people (including older
disabled people) should be able to live their lives and have the same choice,
freedom, dignity and control over their lives as non-disabled.
NCIL Products
http://www.ncil.org.uk/ulos.asp
Learning products available from Wave 1 (Year 1) of the DH User-led
Organisations Project Action and Learning Sites.
NCIL Protocol
http://www.dhcarenetworks.org.uk/personalisation/topics/browse/directpayment
s/supportsystems/responsive//parent=6411&child=6489
This document outlines the protocol for developing and expanding local userled support services and Centres for Independent Living. DH guidance states
provision of support services are key to successful Direct Payments
implementation, and that support provided through voluntary/recipient run
organisations has been shown to be particularly effective and valued by
recipient.
183
References
This section contains a list of all the references which appear throughout the
chapters that make up this Support Pack.
1
Inter-Agency Group of statutory and voluntary organisations: Response to
Green Paper Independence, Well-Being and Choice.
www.nhsconfed.org/docs/iag_asc_greenpaper_fullresponse.doc
2
Jenny Morris (2006) Centres for Independent Living / Local user led
organisations: a discussion paper for the Department of Health
3
Department of Health (2007), User-led Organisations Project: policy
document, Social Care, Local Government & Care Partnerships Directorate,
September 2007, Department of Health Publications DH_078802
Prime Minister’s Strategy Unit (2005), ‘Improving the Life Chances of Disabled
People’
4
5
Department of Health (2007), User-led Organisations Project: policy
document, Social Care, Local Government & Care Partnerships Directorate,
September 2007, Department of Health Publications DH_078802
6
Department of Health (2007), ULO Project policy document
7
Disability Rights Commission (2002), policy statement on Independent Living,
quoted in Department of Health’s ULO Project policy document
8
The concept of the social model of disability dates back to around 1976 when
a group of disabled people, including Vik Finkelstein, Paul Hunt, Liz Finkelstein
and Ken Davis, formed the Union of Physically Impaired Against Segregation
(UPIAS). In their Fundamental Principles of Disability statement they made a
distinction between impairment and disability.
http://www.leeds.ac.uk/disabilitystudies/archiveuk/UPIAS/fundamental%20principles.pdf This groundbreaking
work was later developed and defined as the social model of disability by Mike
Oliver in1983 in his book Social Work with Disabled People, published by
Macmillan. http://www.leeds.ac.uk/disabilitystudies/archiveuk/Oliver/in%20soc%20dis.pdf The idea of the social model,
although starting with people with physical impairments, has since been
broadened to include people with sensory and intellectual impairments, mental
health support needs and other types of impairment. The concept of barriers in
184
the social model context is now widely used to explain the discrimination and
prejudice experienced by other marginalised groups (see next footnote).
9
Quote from paper by Sarah Playforth, Access, Diversity and Equality
Consultant and Trainer (2008), Diversity and Equality: a social model approach
(supplied by the author)
10
Quoted in Count Us In 2000-2005 Report of the Disability Programme Trust
for London 2005
11
10. Additional quote in this extract from a delegate at National Centre for
Independent Living Shaping Our Futures conference, London, 1998 quoted in
Hasler (2003), above
DisabilityLib Alliance research report (2008), ‘Thriving or Surviving:
Challenges and Opportunities for Disabled People’s Organisations in the 21st
Century’, published for DisabilityLib by Scope
12
13
Hasler, Frances (2003), Philosophy of Independent Living, Internet
publication www.independentliving.org/docs6/hasler2003.html
14
Examples of guides
e.g. CHANGE (2009) How to Make Information Accessible: a guide to
producing easy read information, www.changepeople.co.uk
Baroness Jane Campbell (2008) ‘Fighting for a slice or for a bigger cake?
Moving from identity politics to consensus action’, Cambridge: 6th Annual
Disability Lecture, 29th April 2008 quoted in Simon Fanshawe and
Dhananjayan Sriskandarajah (2010), ‘You can’t put me in a box: super-diversity
and the end of identity politics in Britain’, Institute of Public Policy Research
15
16
Examples might include inequalities in health services for people with
learning difficulties; funding opportunities in sports activities for young disabled
people linked to the 2012 Olympics; access to mental health services for Deaf
people; the impact of homophobic hate crime on disabled lesbians, gay men,
bi-sexual and transgender people; police and Crown Prosecution Service
treatment of people with learning difficulties as victims of crime or witnesses.
17
It can be helpful for an organisation to have regular (possibly externallyfacilitated) activities which aim to clarify, define and broaden the underlying
assumptions about who ‘belongs’ to it. Identifying the shared understandings of
‘us’ and ‘them’, ‘we’ and ‘they’ can be very powerful in uncovering who might
feel excluded by that sense of belonging to the organisation.
185
For example, Walsall DIAL ‘Young People as Trustees’ paper, available to
download from http://www.ncil.org/
18
Simon Fanshawe and Dhananjayan Sriskandarajah (2010), ‘You can’t put me
in a box: super-diversity and the end of identity politics in Britain’, Institute of
Public Policy Research
19
Quote from paper by Sarah Playforth – Access, Diversity and Equality
Trainer and Consultant – (2008), Diversity and Equality: a social model
approach (supplied by the author)
20
21
Office for Disability Issues (2008), Independent Living: a cross government
strategy about independent living for disabled people
22
Department of Health (2007), User-led Organisations Project: policy
document, Social Care, Local Government & Care Partnerships Directorate,
September 2007, Department of Health Publications DH_078802
British Institute of Human Rights leaflet ‘A guide to human rights for disabled
people’
http://www.bihr.org.uk/sites/default/files/bihr_disabled_guide.pdf
23
24
British Institute of Human Rights report on the operation of the Human
Rights Act 10 Years On, http://www.bihr.org.uk/
The British Institute for Human Rights (BIHR) is now developing an interactive
online resource which will provide the first one-stop shop of information on
human rights for the third sector in the UK. BIHR is also creating a toolkit for
campaigners which will be available online by March 2010. The toolkit will help
organisations to integrate human rights based approaches in their campaigning
and advocacy on a wide range of themes. These initiatives are funded by
Capacitybuilders, a non-departmental public body. NCVO are leading on the
delivery of the National Support Service for campaigning and advocacy in
England, of which BIHR is a partner taking the lead on a human rights
approach to campaigning.
25
At the time of writing this Support Pack, the Equality Act had just completed
its Parliamentary progress, and can now be referred to as the Equality Act
2010. The majority of the provisions will come into force on 1st October 2010.
The current Disability Equality Duty will continue until 1st April 2011.
Once the Equality Act comes into force, the Disability Discrimination Act (DDA)
and associated legislation will cease to exist, although the DDA will continue to
apply to discriminatory acts up till the date the Equality Act comes into force.
186
The Equality and Human Rights Commission is, at the time of writing this
Support Pack, writing the guidance for the new Act.
Further information is available from the Government Equalities Office website
http://www.equalities.gov.uk/equality_bill.aspx and from the Equality and
Human Rights Commission website
http://www.equalityhumanrights.com/legislative-framework/equality-bill/
26
The Equality Act 2010 covers people who are discriminated against because
of a ‘protected characteristic’. There are: disability, gender reassignment,
marriage and civil partnership, pregnancy and maternity, race, religion or belief,
sex, and sexual orientation. It will also protect people who experience direct
discrimination or harassment because they are associated with a disabled
person (family, friends, carers) or who are perceived to be a disabled person
27
Further information can be found on the Equality and Human Rights website
http://www.equalityhumanrights.com/advice-and-guidance/, the government’s
Directgov website
http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRig
hts/DG_4001068, and many of the larger organisations of and for disabled
people have leaflets and information on the current legislation.
28
Quote by Sunderland Disability Alliance, from Department of Health / Vision
Sense (2009), Developing a ULO: Reflections from Sunderland Pilot Site –
summary report available for download from http://www.ncil.org/
29
Enfield Centre for Independent Living (2009), Revised Decision-Making
Structure document – available for download from
http://www.ncil.org.uk/downloads/Enfield%20DecisionMaking%20and%20Involv
ement%20DC%20913.pdf
30
Enfield CIL document, page 3 and 4
DIAL Walsall describes in ‘Young People as Trustees’ strategy document a
process by which informal group work is done as a prelude to involving young
people on the Board of the organisation. Document for download from
http://www.ncil.org.uk/contentid89.html
Walsall DIAL Young People as Trustees Strategy.doc
31
32
A summary of the Access to Work scheme can be found at
http://www.jobcentreplus.gov.uk/JCP/Employers/advisoryservices/diversity/Dev
_015798.xml.html
or on the Directgov website
http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemes
AndProgrammes/DG_4000347
187
33
Michelene Mason (1991), from ‘Disability Equality in the Classroom’
34
Brenda Kilgallon, quoted in the report Department of Health / Vision Sense
(2009), Developing a ULO: Reflections from Sunderland Pilot Site, above
35
Department of Health (2007), User-led Organisations Project: policy
document, Social Care, Local Government & Care Partnerships Directorate,
September 2007, Department of Health Publications DH_078802
36
Department of Health policy document, above
37
Department of Health policy document, above
38
Department of Health policy document, above, all quotes from paragraphs
42-47
39
List based on that suggested in Jenny Morris (2006) Centres for Independent
Living / local User-led Organisations: a discussion paper for the Department of
Health. She talks about a constellation of organisations together providing the
support and services traditionally found in a Centre for Independent or Inclusive
Living
40
Department of Health policy document, above, quote from paragraph 37
41
List adapted from those provided in Department of Health Policy Paper,
above, and Jenny Morris discussion paper, above
Term used, for example, by Enfield Disability Action / Enfield CIL, ‘Enfield’s
Virtual CIL’, downloadable from http://www.ncil.org.uk/
42
43
Enfield’s Virtual CIL document, above
44
From Breakthrough UK draft partnership code of conduct for CIL,
downloadable from http://www.ncil.org.uk/
Prime Minister’s Strategy Unit (2005), Improving the Life Chances of
Disabled People, pages 84-85 and recommendation 4.3, page 91
45
46
Hastings Voluntary Action website www.hastingsvoluntaryaction.org
47
Information on the different structures for a user-led organisation can be
found in the “What is a ULO?” chapter.
188
48
Some examples include the classified advertisement pages of Disability Now
http://www.disabilitynow.org.uk/living/classifieds/directory
Disability LIB
http://www.disabilitylib.org.uk/
National Centre for Independent Living
http://www.ncil.org.uk/
Equality and Human Rights Commission
http://www.equalityhumanrights.com/fairer-britain/funding-from-thecommission/)
49
These aims and areas of work are taken from the Ask CaSPer website
www.askcasper.org.uk.
50
From the website of Disability LIB (Listen, Include, Build)
www.disabilitylib.org.uk
51
Department of Health (2007), User-led Organisations Project: policy
document, Social Care, Local Government & Care Partnerships Directorate,
September 2007, Department of Health Publications DH_078802
52
From Bath and North East Somerset (2009), Equality Partnership
Specification document – available to download from http://www.ncil.org/
DisabilityLib Alliance research report (2008) ‘Thriving or Surviving:
Challenges and Opportunities for Disabled People’s Organisations in the 21st
Century’, published for DisabilityLib Alliance by Scope
53
54
From Will Bee (2009) for Bath and North East Somerset People First, A
Funding Guide for ULOs – downloadable document on
http://www.ncil.org.uk/contentid91.html
55
56
Quote from DisabilityLib Alliance report (2008), above
Examples from DisabilityLib Alliance report (2008), above
57
Joint Protocol between National Centre for Independent Living and the
Association of Directors of Social Services for the provision of Centres for
Independent Living and User Led Support Services, quoted in DisabilityLib
Alliance report (2008), above
189
58
Personalisation Bulletin East Sussex County Council, February 2010
http://www.eastsussex.gov.uk/socialcare/adults/puttingpeoplefirst/personalisatio
nbulletin.html
See Prime Minister’s Strategy Unit (2005) Improving the Life Chances of
Disabled People and Department of Health (2007) Putting People First
59
60
http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Userledorganisations/ind
ex.htm
61
Available from the NCIL website at http://www.ncil.org.uk
62
In other situations than the personalisation of social care, the different types
of advocacy are usually described as:
Citizen advocacy is where someone independent (often a volunteer) speaks up
on behalf of a disabled person, carer or other person who uses support.
Peer support is where someone with similar experiences provides support to
help the individual to get their views across and/or access the resources they
need. This advocate will be another disabled person, carer or other person
who uses support.
Professional advocacy is where someone acting in a professional (paid)
capacity speaks up on behalf of a disabled person, carer or other person who
uses support.
Self advocacy is where someone speaks up for themselves (with support if
necessary) and negotiates the services or to get the resources that they need.
Group advocacy is when a group of disabled people, carers or others using
services work together to get the resources they need. For example, a group of
disabled people living in a residential setting, support each other to speak up to
get improvements in the quality of their lives.
63
Morris J, July 2006, Centres for Independent Living / Local user-led
organisations: A Discussion Paper, July 2006,
http://www.dh.gov.uk/en/Policyandguidance/Healthandsocialcaretopics/
Socialcare/DH_076663
64
Based on the four elements of a CIL identified in David Gibb: Text of seminar
presentation; Centre for Disability Studies,
University of Leeds, 22 April 2005
190
65
Various different options for CILs can be found in Breakthrough UK Ltd. CIL
presentation and Enfield Disability Action Enfield’s Virtual Model for a CIL, both
documents downloadable from http://www.ncil.org.uk and in Morris (2006),
above
Prime Minister’s Strategy Unit (2005) Improving the Life Chances of Disabled
People, London, The Stationery Office
66
67
Improving Life Chances, page 8 (standard print version)
68
This is described in an educational setting (but is equally applicable to any
other environment) by the Alliance for Inclusive Education
http://www.allfie.org.uk/pages06/about/integration.html
69
Disability Rights Commission (2002) Policy Statement on Social Care and
Independent Living, Disability Rights Commission
70
Improving Life Chances report, page 71
71
Department of Health User Led Organisations Project Policy Document,
Social Care, Local Government & Care Partnerships Directorate, September
2007 (N.B. this definitions document is based substantially on definitions within
the above Department of Health publication).
72
Disability Rights Commission (2002), policy statement on Independent
Living.
73
Office for Disability Issues (2008), Independent Living: a cross government
strategy about independent living for disabled people
74
Office for Disability Issues
75
Mapping User-Led Organisations: User-Led Services and Centres for
Independent Living: A Literature Review Prepared for the Department of Health,
Supplementary Report No 1,
http://www.leeds.ac.uk/disability-studies/archiveuk/index.html
76
Prime Minister’s Strategy Unit (2005), Life Chances of Disabled People
77
DIAL Barnsley Charter for Promoting Independence
78
Jenny Morris (2006), Centres for Independent Living / local user-led
organisations: A discussion paper for the Department of Health
191
79
Speech by Phil Hope MP, Minister of State for Care Services, 18 March
2009: Progress on Personalisation Conference "Putting People First: One Year
On", published on Department of Health website
80
Jenny Morris (2006)
81
An amendment to the Equality Bill during its passage through Parliament
early in 2010 made it explicit that providing accessible information is part of
meeting the duty of reasonable adjustment to practices and the provision of
auxiliary aids. “Those bound by the duty must take reasonable steps to provide
information in an accessible format where disabled people would otherwise be
at a substantial disadvantage in the way that information is being provided” the Parliamentary Under Secretary of State at the Department of Health,
Baroness Thornton, also said that the Government “wants to see a significant
increase in the reported levels of compliance with the duty where it concerns
the provision of information in accessible formats”.
82
United Kingdom Association of Accessible Formats www.ukaaf.org
83
DAISY format, synchronized text and audio content, is also used for epublications. It enables a more structured approach to audio versions of
publications and books. More information can be found at
http://www.rnib.org.uk/professionals/accessibleinformation/accessibleformats/d
aisy/Pages/daisy.aspx
CHANGE (2010), ‘How to make information accessible: a guide to producing
easy read documents’,
http://www.changepeople.co.uk/productDetails.php?id=2010&type=3
available as a free download or to buy as a hard copy.
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See, for example, the easy read version of guidance for local authorities
working with user-led organisations at
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digi
talasset/dh_096921.pdf
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Based on information in the CHANGE guide, above
87
Based on information in the CHANGE guide, above
88
Examples include Community Network for Manchester (2008), Guidelines for
Accessible Meetings and Events, available to download from
http://www.mdpag.org.uk/pubs.htm and former Disability Rights Commission’s
guidance on Organising Accessible Events, still available via the helpline of the
Equality and Human Rights Committee, http://www.equalityhumanrights.com/.
192
The Centre for Accessible Environments (www.cae.org.uk) produces venue
checklists, as does Tourism for All which produces an ‘Accessible Solutions’
manual and self-audit toolkit.
89
For example, the Interfaith Calendar
http://www.interfaithcalendar.org/index.htm or the BBC
http://www.bbc.co.uk/religion/tools/calendar/. It is worth checking more than one
source as calendars may cover different religious or cultural groups. Other
examples include http://www.woodlandsjunior.kent.sch.uk/Homework/religion/calendar.htm#mar
The venue should comply with – and preferably go beyond – the relevant
Disability Discrimination Act 1995 Code of Practice, which can be downloaded
from
http://www.equalityhumanrights.com/uploaded_files/code_of_practice_rights_of
_access.pdf
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For example, event PAs provided by Independent Living Alternatives work to
a clear social model-based brief http://www.ilanet.co.uk/sitebuildercontent/sitebuilderfiles/event.pdf
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See, for example, information on the East Sussex County Council (ESCC)
website
http://www.eastsussex.gov.uk/childrenandfamilies/childcare/parentsandcarers/fi
nding/options/default.htm
Childminding co-ordinators in ESCC may be able to provide information
http://www.eastsussex.gov.uk/atoz/heading505.aspx?forms=&acc=1&ae=1&ah
=1&al=1&ar=1&aw=1
Also national resources and information on www.everychildmatters.gov.uk
National Childminders Association
http://www.ncma.org.uk
http://www.ncma.org.uk/pdf/wwc1_working_with_childminders.pdf
The ‘Working Effectively with Disabled People: Etiquette Guide’ chapter in
this support pack provides tips which may be useful for preparing such
briefings. Examples of inclusive presentation/training techniques include:
 always reading out what is on slides or flipcharts;
 describe diagrams or visual images;
 keep information on slides brief, simple and uncluttered;
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 allow sufficient time for people who use communication support, people
with speech impairments or communication devices to make their
contributions;
 make sure only one person talks at a time;
 do not talk when facing away from the group (e.g. when writing on
flipcharts);
 avoid the use of jargon, abbreviations and technical language;
 if it is helpful for participants to know such terms, explain clearly what
these are (including a red ‘jargon-alert’ traffic light in the delegates’
packs can be useful for participants to hold up if the presenter uses
unfamiliar jargon without explanation – and if this is visually accessible to
the presenter of course!);
 videos, DVDs or film should also have sub-titles, British Sign Language
interpretation and audio-description, etc.
Workshop leaders should be particularly aware of the need to allow time and
opportunity for everyone to make their contribution.
The appendix with sample booking forms is separate to this chapter.
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Prime Minister’s Strategy Unit, Improving the Life Chances of Disabled
People, 2005.
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Jenny Morris (2006) Centres for Independent Living / Local user led
organisations: a discussion paper for the Department of Health and various
different options for CILs can be found in Breakthrough UK Ltd. CIL
presentation and Enfield Disability Action Enfield’s Virtual Model for a CIL, both
documents downloadable from http://www.ncil.org.uk
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Inter-Agency Group of statutory and voluntary organisations: Response to
Green Paper Independence, Well-Being and Choice
www.nhsconfed.org/docs/iag_asc_greenpaper_fullresponse.doc
97
See note 2, above
Commission for Racial Equality (2002), ‘The duty to promote race equality –
a guide for public authorities’
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Resolution for Boards of organisations in East Sussex aiming to become
user-led (ULOs), see the template resolution in this support Pack.
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RAISE equality and diversity toolkit, http://www.raise-networks.org.uk
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