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TitleLiving at Home with a disability-the experience of people with disabilities of support from their
LanguageEnglish
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Total Pages87
Table of Contents
                            Context
Selection criteria
Ethical approval
Recruitment
Interviews
Interviewees
Data analysis and report
Choice and control
Greater sense of personal identity
Desire to avoid a move to institutional care
Influential role of parents
Personal space and privacy
Influence of direct payments
Summary
Safety and security
Familiarity
Familiarity was a factor which influenced the use of natural community supports for most interviewees, irrespective of gender, age or impairment type. Many said that being known in the locality made independent living easier, by offering a range of trusted natural community supports, to be accessed when and as required by the person with a disability. Typical comments from people who live in small towns are:
Quality of accommodation
Choosing a living arrangement
Summary
How to deal with everyday practicalities
	Shopping
	Preparing food
	Housework
	How to ask for help
	Using general community services
	Computers and technology
	Assistive technology
Connecting with other people
Having a social life
Relating to the family of origin
Protecting children
Relating to other people with disabilities
Relating to professionals
Work and productive activity
Summary
Loneliness and lack of intimacy
Maintaining privacy
Barriers to socialising
Managing to survive
Planning to survive
Strategies for dealing with adversity
Summary
Ireland in the 21st century
Getting the basics right
Living a self-determined life
Summary
Themes and priorities
                        
Document Text Contents
Page 1

Living in your own home with a
disability
- the experiences of people with
disabilities of support from their
community

Hugh O’Connor, Maureen Gilbert and Bríd McGrath
OCS Consulting
For the National Disability Authority

July 2012

Page 2

Living in your own home with a disability
- the experiences of people with disabilities of support from their community. OCS Consulting,
2012


2

“I feel better about myself ...making my own decisions ...when to get
up, what to eat, what to wear ...what to listen to on the radio, what
doctor to attend ...that kind of thing.” (54)

“I do as much as I can [for myself] ...As soon as you let someone in it’s
a slippery slope ...I miss out on a lot of things [because of impairment]
... but at least that’s my decision [not to do them].” (6)

“Help with practical stuff is great ...It’s really appreciated...when it’s
done well,...when the person doesn’t belittle you or make you feel
stupid or small.” (52)

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- the experiences of people with disabilities of support from their community. OCS Consulting,
2012


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Interviewees who enjoyed good contact with other people felt that this
compensated for certain lacks in their lives:


‘’There’s things I’d love to have you know... a job ...more money ...but I
think of myself as lucky ...because I have good friends.’’ (9)


Others, who had less contact and companionship in their lives, felt their
absence:


Unfortunately everything is based on the fact that I am on my own and
[companionship] is a big part of what I miss.”(19)


Those who were in long-term relationships valued them enormously:


“Marrying me was a brave thing to do... It was a one-way ticket [due to
deteriorating impairment]... but we pioneered and persevered ...It was
important that [name] was the right wife ...who could come on board
and accept everything overnight ...It says it all.” (3)

“My wife is a saint ...she was so patient with me ...I know I was horrible
to live with [when I became disabled] ...so cranky, bad mooded all the
time ...I had a huge chip on my shoulder for a wee while ....thank God
she didn’t leave me.” (10)


The avoidance of the use of natural community supports can also have
negative aspects. Interviewees cited contact and companionship with others
as making the difference between existing and having a good life:


‘’I have been on my own a lot [isolated] in the past ...It’s not a good
place to be ...You have to force yourself out of it ...get moving ...It’s
important to keep in touch with people...Otherwise things get in on you
pretty quick.’’ (36)

“It’s not healthy to be on your own all the time ...Even if you don’t need
help with anything specific, like... You still have to have a bit of
chat.....know what’s going on in the world and your own home town...
Otherwise you’re just serving time.” (53)


Several interviewees explained how friendship made it easier to access
natural community support when needed:


“If I didn’t have [the computer club] and the [disability] network and my
old workmates it would be just me, the wife and the boy [long
pause]...It’s important you have friends who you can rely on ...who you
don’t mind asking for help ...a lift or something simple like that.’’ (10)

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Living in your own home with a disability
- the experiences of people with disabilities of support from their community. OCS Consulting,
2012


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“I’ve had good friends all through my life ...but it’s not just about them
helping me ...I’m there for them when something goes wrong ... I’ve
listened to them when they’ve lost a boyfriend ...or they’ve had a bad
day.’’ (7)

Interviewees were adamant that everyone disabled or not, uses “natural
community supports” as a normal part of life:


“Everyone needs help from time to time ...We all need to help each
other [and it’s no different for people with disabilities].’’ (51)


An interviewee summed up participants’ general attitude to contact with
others:


“Life...whatever way you are living it ...no matter who you are ...is about
people....the people you mix with every day...the people you think of as
your friends.’’ (52)



Having a social life
While some interviewees said that they spent too much time alone (see pages
44-45), experienced barriers to socialising (pages 46-48), or found socialising
too tiring or challenging (pages 48-49), others, people with sensory
impairments in particular, described a rich and varied range of social
activities, including chess, dancing, hill-walking, fishing and watching sports
matches with “the lads”. Some expressly linked social activities with friendship
and support:


“I really like the computer club ... The craic is mighty...We take no
prisoners and slag each other off...You wouldn’t want to be too
sensitive ...although no-one crosses the line [offends others].” (10)

“I love chess ...It’s a real mental challenge ...It’s a great game for me ...
I just get totally absorbed in it ...and I have found it’s a great way for
making new friends...The first thing I did when I moved [to a new
location] was to join a new chess club ...That put me in touch with
people.’’ (5)


Relating to the family of origin

Many interviewees valued their connections to their families:


“I came from a strongly bonded family ... We don’t live in each other’s
pockets ...but we are supportive of each other. I would love to see
everyone have that level of family back-up...It seems to be becoming
increasingly rare.” (3)

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Appendix 6

Ethical Oversight Group

Members: Sharon Foley, Prof. Séamus O Cinnéide, Dr. Margaret Rogers

Invitation for the Ethical Oversight Group

June 7, 2011

Dear,

Maureen Gilbert, Dr. Bríd McGrath (a Research Associate in the School of
Social Work and Social Policy in Trinity College Dublin) and I have been
awarded a contract (under the OCS Consulting banner) by the National
Disability Authority to conduct approximately 60 face-to-face interviews with
people with disabilities, in order to explore the use of natural community
supports in promoting independent living among adults with disabilities in
Ireland. The NDA defines “natural supports” as people who are not disability
service providers but who provide assistance, contact or companionship to
enable people with disabilities to participate independently, or partially
independently, in integrated community settings. Interviewees are to be adults
(over 18 years) with physical, sensory, intellectual and cognitive disabilities
who either by choice or circumstance receive no or minimal support (e.g.
sporadic respite) from disability service providers. The resulting report will
take a narrative, rather than analytical, approach to documenting the views of
the interviewees. NDA regards this as innovative, ground-breaking work. The
work is to be completed by November 2011.

As you might expect, we are anxious to ensure that our work on this project is
conducted in an exemplary and ethical manner and therefore wish to establish
an ‘Ethical Oversight Group’ to help us with this. We envisage 3 members, to
include:

- at least one senior academic with ex pertise in qualitative research on
sensitive issues

- at least one senior regular commissioner of qualitative research on
sensitive issues.

We intend that this group will provide us with support and advice at critical
stages of the study

- ethical oversight of the intervie w protocol, recruitment process,
research tools etc

- ethical oversight of the interview pr ocess, as a reference point in the
event of any sensitive issues or disclosures

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We do not propose that this should be unduly onerous for those on the
Oversight Group. We envisage 2 or possibly 3 meetings, and some e-mail
contact, particularly around a small number of ‘milestones’ in the project, and
will, of course, endeavour to fit it around members’ other commitments. We
are looking for oversight and advice, rather than approval, and will, of course,
indemnify the members against any adverse results arising from the conduct
or outcomes of the study. As you ‘tick all of the above boxes’, we would very
much like you to be a member of this Ethical Oversight Group and wonder
would you consider this request on our behalf?

Many thanks for your kind help in this matter and for considering this request.
I will look forward to hearing from you.

Yours sincerely



Hugh O’Connor

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