Tri
House by Shane Lonergan
from Moorehaven Centre in Tipperary Town
Where we Live
A National Study done by
Members of the Inclusive Research Network
ublin
© Inclusive Research Network, National Federation of Voluntary Bodies
and National Institute for Intellectual Disability, 2010
This publication should be referenced as:
Inclusive Research Network (2010). Where we live: A national
study done by members of the Inclusive Research Network
through surveys.
Inclusive Research Network
National Federation of Voluntary Bodies
http://www.fedvol.ie/Inclusive_Research_Network_IRN/Default.241.html
National Institute for Intellectual Disability
http://www.tcd.ie/niid/research/irn/
ACKNOWLEDGEMENTS
Many people have worked on this project:
• People with intellectual disabilities who
participated in the surveys.
• Ray Murray, Zoe Hughes, and Errol Cocks,
research staff at the National Institute for
Intellectual Disability, who participated in the
Galway workshop.
• Mary Barrett, administration staff at the National
Federation of Voluntary Bodies who supported
members of the Inclusive Research Network,
helped in the organisation of meetings and made
contact with members of the Inclusive Research
Network to write this report.
• Sarah Jones, research administrator at the
National Institute for Intellectual Disability also
helped following up with co-researchers and
supporters when they did the survey and helped in
the reviewing of this report.
• Co-researchers and supporters that did not do the
surveys but have attended the workshops and
shared their knowledge and ideas.
• Organisations and staff that supported coresearchers
to survey people getting services
from them.
• Everyone who kindly reviewed this report and
made comments to make it easier to read.
We would like to thank them all for their effort in
making this research project and report possible.
CONTENTS
Page
EXECUTIVE SUMMARY ..............................................................1
TEAM ............................................................................................3
THE INCLUSIVE RESEARCH NETWORK..................................5
THE RESEARCH WORKSHOPS.................................................6
THE NATIONAL SURVEY “WHERE WE LIVE”..........................7
Developing the Survey ...............................................7
Ethics...........................................................................9
The Survey Tools........................................................9
How did We Survey People? ...................................11
WHAT DID WE FIND OUT? .......................................................16
KEY MESSAGES FROM THE IRN MEMBERS.........................38
CHALLENGES ...........................................................................39
PRESENTATION OF RESULTS ................................................42
1
EXECUTIVE SUMMARY
The Inclusive Research Network is a group of people
with intellectual disabilities from Ireland who do research.
We are supported by the National Federation of
Voluntary Bodies and the National Institute for Intellectual
Disability.
We organised 3 research workshops between 2008 and
2009 where we learnt research skills. We came up with the
idea of doing a research project on: where people with
intellectual disabilities live and how they like it.
We decided to do a survey to find out the answers. We
did a survey with easy to read questions and pictures about
where people live and how they like it. We practised how to
ask the questions and how to write the answers.
11 members of the Inclusive Research Network did the
survey with 43 people. These members did the survey from
June to September of 2009. Staff at the National Institute for
Intellectual Disability analysed the answers.
We then organised 2 meetings to discuss what we
found out:
• Most people who did the survey were women and most
people were between 20 and 35 years old.
• Most people liked where they lived.
2
• Most people lived in towns and with their families.
• Most people had their own kitchen, bedroom and
bathroom.
• Most people had access to taxis and buses.
• More than half of the people did not choose who they
live with and only half of the people chose where they
live.
• Half of the people said that they would change things
in their homes, only a few would change things about
the people they live with, and some would change
things about the support they get.
Members of the Inclusive Research Network said that
more work needs to be done for them to live independently
including: more services for people with intellectual
disabilities, more control for people over funding, more
choices about where and who to live with, more
individualised supports, change in families’ attitudes about
living independently and more opportunities for people with
intellectual disabilities to be heard.
3
TEAM
The Co-Researchers
Simon Buggy
Carmel
Carpenter
Nicole Carroll
Brian
Donohoe
Sarah Flynn
Michael
Freiberg
Ann Mahon
Emma
McCormack
Seamus
Murphy
Patricia O’Dea
Pauline
O’Meara
Marie Wolfe
The Facilitators
The National Federation of Voluntary Bodies
Edel Tierney John Doyle Stephen Curtis
4
The National Institute for Intellectual Disability
Patricia O’Brien
Edurne García
Iriarte
Darren Chadwick
The Supporters
Geraldine
Bane
Antonio
Cebas
Lavinia
Donoher
John Doyle
Josephine
Flaherty
Edurne
García Iriarte
Michelle
Joyce
Kieran Keon
Dawn
Lonergan
Pauline
O’Meara
Also Geraldine McNamara, Eilis O’Connor, Aine Taylor & Sara Teal
External Advisor
Roy McConkey
5
THE INCLUSIVE RESEARCH NETWORK
The Inclusive Research Network is a group of people who
come together to do research and talk about research
that is important to people with intellectual disabilities.
• The Inclusive Research Network is
a joint project of the National
Federation of Voluntary Bodies and
the National Institute for Intellectual
Disability.
• The IRN members are:
o Co-researchers: people with
intellectual disabilities doing
research;
o Facilitators: trained researchers;
o Supporters: people who support
the co-researchers.
• This network is for anyone
interested in this type of research.
For example, people from services,
self-advocacy groups,
organisations, researchers and
community groups.
6
THE RESEARCH WORKSHOPS
We conducted 3 research workshops between 2008 and
2009.
• We learnt:
o Basic research knowledge and
skills.
o Research methods.
• We gained some hands-on
research experience.
• We explored issues about:
o Who can do research?
o Why do we do research?
o Ethics and consent.
During these workshops co-researchers said that they
would be interested in researching:
• Choice about who to live with.
• Freedom to be independent.
• Moving into my own house and
independent living.
• Privacy and my rights.
• Alternatives to group housing.
7
THE NATIONAL SURVEY “WHERE WE LIVE”
The Inclusive Research Network decided to do a study
about where people with intellectual disabilities live. We
wanted to look at:
• What people like and do not like.
• What supports do people need.
• What people would like to change
about where they live.
We decided to do a survey. This was a way to use and
transfer the skills learned in the inclusive research
workshops.
Developing the Survey
We developed the survey in different steps.
Workshops 1 & 2:
• The co-researchers made
suggestions about the survey
questions.
8
After workshops 1 & 2:
• The facilitators developed
potential questions and added
pictures.
• The co-researchers tried out
the questions in Dublin and
Galway and gave feedback:
o Suggested new questions
o Changed some of the
questions:
The order to ask them.
The wording of
questions.
The topics.
In workshop 3:
• We all sat in small groups of
four and tried out the survey.
• The facilitators asked the coresearchers
and supporters
again to give feedback.
You can see the final version of the “Where We Live”
national survey online at www.fedvol.ie.
9
Ethics
The project received ethical approval through the
Research Ethics Committee at Trinity College Dublin.
The Survey Tools
We developed the survey, the answer booklet, letters of
information, consent forms, a checklist and instructions.
Survey Answer booklet
Letters of information
For survey participants
For supporters,
organisations, and families
Consent forms
For survey
participants
For supporters
10
Checklist to make sure people
understood the consent form
Instructions
All documents included pictures. We also checked the
documents to make sure they were easy to read.
• We used pictures and questions from the “Adults
with Learning Difficulties in England” 2003/4
survey with the permission of the authors.
• Other pictures used in the Where We Live survey
or in this report were taken from © Photosymbols
or taken at the IRN workshops with members’
permission.
11
How did We Survey People?
We did a training workshop in June of 2009 in Galway.
• All co-researchers had a chance to
practice with the survey.
• Co-researchers took turns at asking
and answering questions.
• Co-researchers had a chance to
experience doing the survey and
responding to the survey.
• Co-researchers also learnt about
sampling different people to take part
in the study:
o Males and females.
o People of different ages.
o People who lived in different
places (group homes,
independent living, with
family).
12
Following this meeting, some CO-RESEARCHERS
volunteered to take part in the national study.
.
To take part in the national study, each coresearcher
asked a family member, a staff person, or
other people to be their SUPPORTERS to help them
to do the survey.
Two FACILITATORS, one from the National
Federation of Voluntary Bodies in Galway and one
from the National Institute for Intellectual Disability
in Dublin helped the co-researchers and supporters
over the summer to keep deadlines and offered
additional support.
13
The facilitators provided support to the co-researchers
and supporters.
• The facilitators:
• E-mailed co-researchers and
supporters regularly.
• Called some co-researchers and
supporters who did not use e-mail.
• Developed a website explaining
how to do the survey and how to
use all the materials.
• Reminded the co-researchers and
supporters to use the website.
• Also worked as supporters.
• Most of the surveys were done
between July and August, but we also
allowed for late submissions.
14
11 Co-researchers did the survey.
• The co-researchers did the survey
with people in their own area.
• The co-researchers were based in
Galway, Clare, Monasterevin,
Roscommon, Dublin, Waterford,
Carrick - on - Suir and Cork.
• The role of the supporters was to:
o Help co-researchers
through all the steps.
o Record the answers.
o Make sure that each person who
responded to the survey:
Understood what the study was
about.
Signed a consent form.
15
The co-researchers and supporters sent the responses by
post to the facilitators during August and September.
• The facilitators entered the data into a
computer file and did statistical
analysis.
• The facilitators presented the key
findings to a group of co-researchers
and supporters at a meeting.
o The facilitators used a series of bar
charts with pictures.
• Seven co-researchers and two
supporters attended the meeting
where everybody:
o Discussed the findings.
o Compared the findings from the
study with co-researchers’
experiences of doing the survey.
o The co-researchers discussed the
key messages for the government
and decision makers in
organisations.
16
WHAT DID WE FIND OUT?
Co-researchers did 43 surveys around the country.
More than half of the people who responded were females
and some were men.
37
63
0
10
20
30
40
50
60
70
Male Female
Percentage
(16 males)
(27 females)
17
Most people were aged between 20 and 35 years, or 36
and 50. Only a few were under 20 years or over 50 years.
2
41
37
20
0
5
10
15
20
25
30
35
40
45
Under 20 20-35 36-50 51-60
Percentage
Most people lived with their families, some lived in group
homes, and a few in independent living apartments.
21
43
5
0
5
10
15
20
25
30
35
40
45
Group home Family Semi-independent
apartment
Percentage
(1 person)
(17 people)
(15 people)
(8 people)
(18 people)
(9 people)
(2 people)
18
On average
• People who lived in group homes said that they lived
with nine people.
• People who lived with their families said that they lived
with three people.
• People who lived semi-independently, said that they
lived alone or with one other person.
9
3
1
0
2
4
6
8
10
Group home Family Semi-independent
apartment
Numberofpeople
19
On average
• People who lived in group homes and people who lived
with their families said that they had lived there for
about 10 years.
• People who lived independently said that they have
lived there for only about four years.
10
4
10
2
4
6
8
10
Group home Family Semi-independent
apartment
Years
Most of the people said they had their own kitchen.
61
40
0
10
20
30
40
50
60
70
Yes No
Percentage
(26 people)
(17 people)
20
Most people said that they were able to use the kitchen
when they wanted.
88
12
0
10
20
30
40
50
60
70
80
90
100
Yes No
Percentage
About half of the people said that they had their own
bathroom.
51
49
0
10
20
30
40
50
60
Yes No
Percentage
(37 people)
(5 people)
(22 people)
(21 people)
21
Almost all people said that they had their own bedroom.
86
14
0
10
20
30
40
50
60
70
80
90
100
Yes No
Percentage
Only some people had a key to their bedroom.
35
65
0
10
20
30
40
50
60
70
Yes No
Percentage
(37 people)
(6 people)
(15 people)
(28 people)
22
Most people said that other people did not come into their
bedroom when they were not there.
34
66
0
10
20
30
40
50
60
70
Yes No
Percentage
A lot of people lived in a town, many in the countryside
and only a few in the city.
Where people lived
12
48
41
0
10
20
30
40
50
C
ity
Town
C
ountryside
Percentage
(27 people)
(14 people)
(17 people)
(20 people)
(5 people)
23
Most people had access to taxis and buses. Many had
access to trains. Only a few had access to aeroplanes
and trams.
84
47
84
5
14
0
10
20
30
40
50
60
70
80
90
Taxi Train Bus Tram Aeroplane
Percentage
(36 people)
(6 people)
(2 people)
(36 people)
(20 people)
24
In general, most people liked where they lived.
88
10
0
10
20
30
40
50
60
70
80
90
100
Yes No
Percentage
They said that they liked where they lived when:
• It was a nice house or flat.
It is a nice and
safe place.
I like the garden, it's nice and big...
(37 people)
(4 people)
25
• It was near things that were important to them.
•
• They could be independent.
• They liked the people they lived with.
I am happy where I am because
it’s my home, I know my
neighbours, Granny lives
beside me and the church is
close. I like my family.
Because it is near work and
town and a shop around the
corner. Nobody giving out to
me...
I like it because I can help around
the house. I can walk to work, staff
are nice to me.
Plenty of friends, happy with
staff and house mate and area. More space, see lots of
nature; like the people I
live with and mom and
dad support me.
Independent, come and
go as I want…
26
They said that they didn’t like where they lived when:
• There were no people around or no things to do.
• They wanted to have more independence.
When we compared people living in group homes and
people living with their families we found that:
• People living in group homes also liked where they lived
because of the accessibility of their homes.
Because there are a lot of old
people, there are no people of
my own age. It's kind of boring.
I love the countryside but want to move away
from parents. I would like to live on my own
independently. I want to be completely
independent.
Too quiet, I have no
friends there. There
is not much to do or
places to go.
Also good because
all deaf signs.
27
More than half of the people did not choose who they live
with.
43
58
0
10
20
30
40
50
60
70
Yes No
Percentage
Only half of the people chose where they lived.
50 50
0
10
20
30
40
50
60
Yes No
Percentage
(23 people)
(17 people)
(21 people) (21 people)
28
About half of the people said that they would change
things about their homes.
49
51
0
10
20
30
40
50
60
Yes No
Percentage
The things they would change about their homes were:
• Having their own homes and rooms.
A room of my own.
I would like to live
in my own house.
(22 people)
(21 people)
29
• Choosing the people they lived with.
• Changing room or house.
• Having more responsible landlords/landladies and more
respectful neighbours.
A bigger room
and the colour.
I'd like a new house. I would
like to move, live with girls.
Landlord should look
after the house more.
The neighbours are a problem
and the landlady gives out
sometimes and watches my
every move.
To move in with people and to be able to choose
the people if possible.
30
• A few people wanted to do more around their home and
have their houses kept better.
Get my telly working
properly, better good, be
mobile as much as I can,
like less people.
It’s too quiet. I would
like to do more things.
31
When we compared people living in group homes and
people living with their families, we found that:
• People living in group homes said that sometimes they
did not know the staff.
• People living with their families wanted to have
independence to do more things and have more trust
from their parents to go out in the community.
I like staff at the moment but sometimes relief
staff come and I don’t know them.
I don’t want to be watched by my parents. I want
more independence – to be allowed out more. I
want more trust from my parents. I wish my
parents were not afraid of others in the
community hurting me.
32
Only a few said that they would change something about
the people they live with.
16
84
0
10
20
30
40
50
60
70
80
90
Yes No
Percentage
(31 people)
(6 people)
33
They things they would change about the people they
lived with were:
• Having more choice about who they live with and the
independence they had.
I would like to be more independent but the people
at home are so hard to please. I need staff around
all the time to keep mom happy when I am going
somewhere. I would like to live alone.
It might be nice down the line to get a house mate
but it would only be good if I owned the house and
could choose who I live with.
34
Some people said that they would change things about
the support they get.
34
66
0
10
20
30
40
50
60
70
Yes No
Percentage
They said they would change things about the support
they got including:
• More support to go out.
I would like to be able to
go out more in the
evening with friends.
Support in going out and
making friends - don’t
get much support.
(27 people)
(14 people)
35
• Different people supporting them.
• More support to work.
• More support to look after the house.
• More independence.
Support with work in
my community.
I'd like to see different
people supporting me.
Less support and to be
more independent.
When I move I would like a small house with my
friends. I would need help with looking after it.
36
Was there anything else that people wanted to say about
where they lived?
• Some people said they liked where they lived.
• Some people said they would like things changed where
they lived.
Good relationship with parents and siblings… I love
living on farm and with the animals. Freedom on the
farm is great. I like not being forced to do things in a
group like those in a group home. I was asked to join a
group home and said ‘no I didn’t want to’. I would like to
live in a house independently but not in a group home.
I'd like to be more safer.
There are a lot of gangs,
young people, drunk, very
loud.
37
• Some people said they lived independently.
In the future I'd like to
move out to “K” with my
boyfriend.
Nice area, nice distance from town. Quiet enough
because it’s a little bit out of the town. I have moved from
family to semi independent housing where I lived with two
people to move into my own county council house on my
own.
This took 2 and half years. Showing the county council
the problems with the semi independent housing it
managed to speed up the process. The support person
wrote a letter to the county council to say I had the ability
to live independently. I got to furnish the house so I got to
put the stamp on the place myself. I was supported by my
family to do this and I am very happy that I got to do this
myself and not have someone else doing this.
38
KEY MESSAGES FROM THE IRN MEMBERS
A group of co-researchers talked about what the findings
meant to them. They concluded that:
• There is lack of services for
individuals to seek independent
living.
• More control over funding is
needed for people to have
choices about where they live
and who they live with.
• Individual needs have to be
considered and supports need to
be in place so that it is less
frightening for people to be
independent.
• There are few choices for people
to decide where they live and
who they live with.
• Attitudes should change for
families to allow their family
member to be more independent.
39
• There are not enough
opportunities for peoples’ voices
to be heard.
CHALLENGES
We found some challenges while conducting this
research.
• Ethical approval
Some organisations required the
researchers to apply for ethical
approval within each organisation.
• Support to work out of the
organisation
Supporters and co-researchers
found it difficult to get to do the
survey after the workshop activities.
40
• Contact with co-researchers
It was difficult to keep in touch with
some IRN co-researchers through
emailing. Often communication
depended on the support person
getting the communication and
passing it onto the co-researcher.
• Making documents easy to
read
It was difficult to make easy to read
documents for everyone. The coresearchers
had different skills and
the organisation of making
accessible materials for everyone
has many rounds of feedback.
41
• Holiday time
The co-researchers had difficulty
finding support. We did the survey
during the summer and many
supporters were on holidays. Some
organisations were also closed.
• Co- resarchers’ participation
Most of the co-researchers were
members of Advocacy services and
it was difficult for co-researchers
that were not in self-advocacy
groups to do the survey.
42
PRESENTATION OF RESULTS
Members of the Inclusive Research Network Simon
Buggy, Sarah Flynn, and Marie Wolfe presented the
findings of the “Where We Live” research project at the
2009 National Disability Authority Conference in Dublin.
They were supported there by Pauline O’Meara and
Michael Freiberg.
43
This report was prepared by
Edurne García
Iriarte
Edel Tierney Brian Donohoe
Contact information:
Dr. Edurne García Iriarte
National Institute for Intellectual Disability
School of Social Work and Social Policy
Trinity College Dublin
3 College Green 4th
Floor
Tel.: +353 1 896 2200
Fax: +353 1 677 9131
http://www.tcd.ie/niid/