Making Participation in

Decision Making More Than

Just Words
Rob Greig
Chief Executive
National Development Team for Inclusion

people
people lives
lives communities
communities
 The Valuing People Mantra

Nothing About Us Without Us

people lives communities

What Do I Mean By Participation?

People (with learning disabilities) being involved at the

centre of decision making so that:
Their voices directly affect decisions about their lives
People in ‘professional’ roles understand how their
actions impact on people’s lives
Services and communities work in ways that reflect
what people say they want and need – not what others
think they need.

i.e. People have more control over their lives

people lives communities

 Other Words

Power Being listened to

Control Being heard
Influence Being included
Rights Being valued
Respect Being a partner
Autonomy Being a citizen
Co-production Being a person

people lives communities

 What Authority Do We Give to
People’s Voices? (1)
The Industrial Relations framework for trade union
recognition might help:
Information – we tell people what is happening
Communication – we tell people what we are doing but
might change things if they make a really good case
Consultation – we discuss what we intend doing, but
at the end of the day we have the right to decide what
happens
Negotiation – both parties must be happy with the end
position
Is there a fifth one?
Handing over Control – the person calls the shots, and
services do what the person wants them to do?
people lives communities
 What Authority Do We Give to
People’s Voices? (2)
In an honest review of how your organisation
involves people in decision making – which
approach would describe how you involve
people?
Information
Communication
Consultation
Negotiation
Handing over Control

people lives communities

 Participating Where?

We need to think about participation in decision making

in a number of different places:
People’s own lives – overall hopes and day to day
decisions (Personal context)
Organisational decision making – including about a
person’s own service and support (Service context)
Major strategic decision-making at regional or national
level (Policy context)
What happens in a person’s own community – beyond
the boundaries of ‘serviceland’ (Community context)

people lives communities

 A Quick Word on Community
Participation
If services are not supporting people to be
participating members of their local communities, then
what sort of life are people being supported to
achieve? Services need to think of strategies to:
Promote social and community inclusion
Use tools like community mapping
Maximise use of ‘non-service’ resources in the
community
Support people to be community members not tourists
Support activities that promote real relationships e.g.
paid work
Evaluate services by whether they promote inclusion
people lives communities
 Person Centred Planning

What it is What it isn’t

People working out their Something done by staff
own vision for their lives to and with people that
A set of hopes and aims the organisation owns
that informs services As assessment process
assessments or part of one
A living process that A set of forms of a
changes as peoples’ lives defined process that has
change an end to it
Support plans that then About how services will
describe how this will be ‘fix’ the negative things
made to happen said about a person
people lives communities
 Person centred support planning

people lives communities

 Using a range of approaches

There is no one way or best way of being

person centred. Do what works for the person:
Essential Lifestyles Planning
PATH
Circles of Support
Etc etc
A central point is that your organisation has
giving power to people at the heart of how it
thinks and behaves

people lives communities

 ‘Deciding Together’s’ Six Building
Blocks Organisational Participation

1. Leadership that leads by example, builds committed

teams and allows time for change to happen
2. Communication, listening to people, improving staff
communication skills, esp. for those who don’t use words
3. Changing Organisational practice, nothing about us
without us, do meetings differently, employ people.
4. Work with advocacy groups, as partners, with everyone
having access to advocacy (in all its forms)
5. Empower staff, because disempowered staff will not
empower the people they support
6. Partnership working, think whole-life, multi-agency
partnerships include people themselves
people lives communities
 Coproduction

An idea that has come from disabled people and is

now national policy in England.
The concept is that:
People are recognised as experts in setting their own
support needs and those of their peers
People have things to contribute to planning and
decision making about their lives
People are involved from the outset in a partnership
around decision making
These ideas are built into the whole organisational and
planning system

people lives communities

 Seven Principles of Coproduction

1. People involved 4. It is clear how decisions

throughout are made
2. People feel safe to 5. People’s skills &
speak up and are experiences are used in
listened to the process of change
3. We work on the issues 6. Meetings, materials &
that are important to venues are accessible
people

7. Progress is evaluated by looking at the

actual changes in people’s lives

people lives communities

 1. People are involved
throughout: think about
who needs to be
engaged 2. People feel safe to
Take action – just do speak up & are
it! listened to: agree how
Don’t wait until you’re to support each other in
ready to coproduce, just making decisions
make a start

7. Progress is 3. We work on issues

evaluated by looking Coproduction in that are important to
at the changes in action! people: work together to
people’s lives agree these issues

6. Meetings, materials 4. It is clear how

& venues are decisions are made
accessible: There are Agree what it is you
different ways to be want to be different &
5. People’s skills &
involved & be heard what success looks like
experiences are used
to achieve change:
Identify who has what
skills & how to use them

people lives communities

 Coproduction – pro’s and con’s

Potential Benefits Potential Challenges

Value for money People will often need
Additional expertise support to coproduce
Health benefits and Those with the power
prevention will feel challenged or
Practical skills threatened
Social capital It needs sustained
support and
independence

people lives communities

Making all this happen - The pitfalls
we all step into

Tokenism
Easy read materials that tell people nothing
Poor quality support
Only involving people about the small matters
Expecting people to be able to do anything – just
because of their ‘label’
Only working with the ‘easiest’ people
Not realising almost everything affects people
with a learning disability

people lives communities

The really big challenges to consider
if participation is to be real

1. Coproduction – understanding what this means for / with

people with learning disabilities
2. Person centred support planning – so services respond
to the person
3. A whole system approach – so we think whole life
4. Giving people control over the money spent on their
services
5. A flexible and diverse market – because if we only offer
people a limited range of choices that isn’t (their) control
6. Ensuring participation and risk taking work hand-in-hand

people lives communities

Ensuring personalisation & risk taking
work hand in hand

Maximising choice and control, whilst effectively managing risk

people lives communities

 A whole system approach

Joining it all up:-

Information, advice and
advocacy
Early intervention &
prevention
Community inclusion
Access to mainstream
public services (e.g.
health, housing etc)

Wider public service

reform - Total Place?
people lives communities
Some Practical Steps to Get Started

Make a commitment to ‘nothing about us without us’

Define coproduction for your organisation
Build a group to champion this work – a group that
includes people themselves
Develop a strategy for building person centred skills
Think community and start building skills for getting
beyond services
Develop a positive risk taking policy
Employ people with a learning disability in your
organisation
Be honest with yourselves
people lives communities