an evaluation of individualised supports to individuals with ...an evaluation of personalised...
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An evaluation of personalised supports to individuals with
disabilities and mental ill health.
Roy McConkey
University of
Ulster
Rachel Stevens
Empower All
Brendan
Bunting
University of
Ulster
Marie Wolfe
Empower All
Edurne Garcia
Trinity College
Dublin
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Drivers for personalisation
Community Services
Self and family
Advocacy
Rights and Equal
Opportunities
Value for Money
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Longitudinal Study
Time 1 Oct-March
2011/12
Time 2 May – July
2012
Time 3 Nov-May 2012/13
Time 4: April-
Aug2014
Intellectual Disability services (N=12) [n=116]
Mental health
services (N=8) [n=64]
Physical disability services
(N=3) [n=17]
•NGO and State •Variable size •Length time
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Time 1
Congregated
Personalised
Family Carers
Congregated
Group Homes
Personalised
Personalised
Family Carers
Time 4
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The number of persons in each accommodation option at the four time points
0
20
40
60
80
100
Personalised Group Home Congregated Family
T1 T2 T3 T4
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Better Life
Living arrange-ments
Personal supports
Relation-ships
Valued Roles
Healthy Lifestyles
Use ordinary services
Use of specialist services
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Information Gathering
Structured Questions
Rating Scales
Interviews
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Domain Significant indicators
Personalised accommodation Has a key to the house Free to come and go as you please
Personalised Supports
Chooses own support staff Had training in advocacy
Has individual plan
Relationships with people not
paid
Friends visited for a meal
Friends stayed over
Neighbours have provided help
Made new friends in past year
Valued roles in the community
In paid employment
Has done voluntary work in the community
Helped neighbours
Healthy Lifestyle Less anxiety
Average weight
Use of mainstream public services
Participates in sports, swimming, fitness
Use of specialist disability services
Does not attend a day centre
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% with Key to the house
0% 20% 40% 60% 80% 100%
Congregated at T1,T3, T4
Congregated T1 to Group HomeT3 or T4
Congregated at T1 toPersonalised at T3 or T4
Personalised at T1, T3, T4
Family at T1, T3, T4
% Yes Time 4
% Yes Time 3
% Yes Time 1
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% with Friends come for a meal
0% 20% 40% 60% 80%
Congregated at T1,T3, T4
Congregated T1 to Group HomeT3 or T4
Congregated at T1 toPersonalised at T3 or T4
Personalised at T1, T3, T4
Family at T1, T3, T4
% Yes Time 4
% Yes Time 3
% Yes Time 1
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% taking part in sports, fitness
0% 20% 40% 60%
Congregated at T1,T3, T4
Congregated T1 to Group HomeT3 or T4
Congregated at T1 toPersonalised at T3 or T4
Personalised at T1, T3, T4
Family at T1, T3, T4
% Yes Time 4
% Yes Time 3
% Yes Time 1
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Informants
People Supported
Key Workers
Relatives
Service
Managers
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Organisation
Leadership was crucial, right from the
board of directors - recognising that we
were going in a different direction to the
one we had done... to the managers and also
recognising the leadership capacity in
individuals right across the organisation.
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Organisation
Genio
“We were part of… a loose alliance of organisations
who were all interested in doing this and who were
sharing examples with each other of things they had
done. It was kind of a learning community”
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Organisation Staffing Genio
The other major factor for us was that our clients
didn’t see these people as staff. They had no previous
history with them. People saw our Genio support
workers as something different, something for them, so
they took ownership of them. Once they took
ownership of it, they flew with it.
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Organisation Staffing Genio
Service Users
We thought our job was to get people
their own homes and help them in their
homes but in fact the job became
helping people to discover who they
were and how to make choices and
what they actually wanted.
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Organisation Staffing
Relatives
Genio
Service Users
“The mindset of families is that they actually
believe that their sons and daughters are
children – they don’t fall into the category of
adults. And that is our fault as service
providers, to have let that happen and not to
have challenged that.”
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Organisation Staffing
Relatives
Genio
Commun-ication
Service Users
“The project has made the
wider organisation see that
the closure of the institution
is a reality and community
integration with a valued
meaningful life chosen by
the clients can be a reality”
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Organisation Staffing
Relatives
Genio
Finances Commun-ication
Service Users Community
Contacts Housing
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Personal-isation
Service Labels
Identity Forming
National Implement-
ation
Personal Budgets