an easier read report containing the full findings from the

Transcription

Family Voices:
Life in Ireland for Families of People
with Intellectual Disabilities
‘A perfect family home’
By Sarah Carroll
JULY 2010
National Institute for Intellectual Disability
School of Social Work & Social Policy
Trinity College Dublin
&
Parents of people with intellectual disabilities
from Ireland
Family Voices: Life in Ireland for Families of People with Intellectual Disabilities, 2010
© National Institute for Intellectual Disability,
Trinity College Dublin; 2010
This publication should be referenced as:
Chadwick, D. D., Finlay, F., García Iriarte, E., Greene,
S., Harrington, J., Lawlor, A., Mannan, H., McConkey,
R., O’Brien, P., Spain, J. & Turner, A. Family Voices:
Life in Ireland for families of people with intellectual
disabilities. National Institute for Intellectual Disability,
Trinity College Dublin.
The National Institute for Intellectual Disability,
School of Social Work & Social Policy,
Trinity College Dublin,
4th Floor, 3 College Green,
Dublin 2, Ireland.
Phone: +353-1-896-2247
Fax:
+353-1-896-9131
http://www.tcd.ie/niid/
2
Acknowledgements
Many people have contributed to and helped us with this
project. Without these people the project would not
have been possible. We would like to thank the families
from the Republic of Ireland who took part in the focus
groups and completed the survey. Many organisations
helped us to contact the families to ask them to take
part. These are: Inclusion Ireland, The National
Federation of Voluntary Bodies, The National Parents &
Siblings Alliance, Special Needs Active Parents Ireland,
22Q11, the Special Needs Parents Association & Down
Syndrome Ireland. We would like to acknowledge the
support of Zoe Hughes, Siobhain O’Doherty, John
Kubiak, Ailish Kennedy, Niamh Lally, Molly O’Keefe,
Sarah Jones, Julie Byrne and Joan Murphy in
conducting this work and preparing this report.
3
Contents
Acknowledgements........................................................3
Contents ........................................................................4
Executive Summary .......................................................5
Research Team .............................................................6
Introduction ....................................................................7
Research Aims ..............................................................9
How We Did the Study.................................................10
Study 1.The Focus Groups .......................................10
Study 2. The Survey .................................................12
What We Found Out ....................................................13
The Main Themes We Found ...................................14
Summary of the Main Concerns & Strengths............35
Comparisons of Strengths & Concerns.....................36
Limitations....................................................................37
Future Research Work.................................................37
Conclusions .................................................................38
Who wrote this report...................................................39
References ..................................................................40
Appendices ..................................................................41
4
Executive Summary
This participatory action research project aimed to find out what life was
like for families of people with intellectual disabilities in Ireland and how
their lives could be better. The project was done collaboratively by
researchers from the National Institute for Intellectual Disability and
parents of people with intellectual disabilities living in Ireland.
Family co-researchers were trained in how to facilitate focus groups and
were involved in developing a survey. They collected information from
70 mothers, fathers and siblings from across Ireland in the focus groups
and from 539 family members living in Ireland from the survey. We
analysed what people told us in the focus groups and what families’
concerns were in the survey.
We found that families have difficulties when things change as they go
through life, when their family member with intellectual disabilities leaves
school or they cannot care for them any more as they get older.
Families want easier access and more information about the supports
and entitlements that are available. Families need support from family,
friends, services and the government. This support helps them to have
a good life and care for their family member with intellectual disabilities.
Families do not want to have to fight for support and their rights.
Families want their family member to be well cared for in services but
this does not always happen. Families want to have better relationships
with services. Societal attitudes to families and people with disabilities
have improved but still often exclude and overlook them.
We found that many of the challenges that families of people with
intellectual disabilities in Ireland are similar to those that families face in
other countries. Families want people with intellectual disabilities and
their families, services, government and policy makers to work together
towards improving things for people with intellectual disabilities and their
families.
5
Research Team
Parent Co-researchers
Frieda
Finlay
Seamus
Greene
Jerry
Harrington
Anne
Lawlor
Jean
Spain
Co-researchers from the
National Institute for Intellectual Disability
Dr.
Darren
Chadwick
Dr.
Edurne
García Iriarte
Dr.
Hasheem
Mannan
Prof.
Roy
McConkey
Prof.
Patricia
O’Brien
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Introduction
‘Family Voices’ is a participatory action research project
that began in 2008.
The project was a collaborative study done by
researchers from the National Institute for Intellectual
Disability (NIID) and parents of people with intellectual
disabilities living in Ireland.
The money came from the European Union. The idea
was to get families of people with intellectual disabilities
doing research that was important to them.
Why is it important to do research with
families of people with intellectual disabilities?
It is important to find out about the lives of family
members because most people in Ireland with intellectual
disabilities live with their families (Kelly et al., 2009).
Family members are often the main supporters of people
with intellectual disabilities.
They give them social support and help them to make
decisions and get the services they need.
Research from around the world has shown that caring
for a family member with intellectual disabilities can be
rewarding but can also be challenging.
Families often feel lonely and exhausted caring and
fighting for services and supports.
Most research has been done about families without
listening to what is important to them, and such research
may not find out what is really important to them.
Using participatory action research could help to find out
how families’ lives could be better and how we can
improve things.
7
What is Participatory Action Research?
This is research that involves people who are personally
affected by the issue under study.
It involves people doing research together to look at a
problem and using what they find out to take action to
make things better.
It is different from previous disability research that has
mainly been done by people who do not have disabilities
and without experience caring for people with disabilities.
It is research with people rather than on them and by
involving the people, it increases the relevance of the
research.
It can empower those involved.
It supports families in their struggle for a better quality of
life.
It addresses the concerns of families themselves.
It leads to the sharing of skills and knowledge. (Turnbull
et al., 1998).
Policy in Ireland for People with an Intellectual
Disability and their Families
The United Nations Convention on the Rights of
Persons with disabilities (CRPD) (2006)
The CRPD supports people with disabilities to claim their
rights, make decisions and be active members of society.
It also says that States should:
• give early and comprehensive information, services
and support to children with disabilities and their
families. (Article 23)
• recognise the right of persons with disabilities to an
adequate standard of living for themselves and their
families. (Article 28)
8
The Disability Act 2005
This Act aims:
• To increase participation of people with disabilities in
society
• To increase access to public services
• To make buildings and services accessible to
disabled people
• To increase employment for people with disabilities
It also supports the right of relatives and parents to
advocate on behalf of their family member with
intellectual disabilities.
National Children’s Strategy (2004)
• The State should make sure that the needs of people
with disabilities are met.
• This means supporting families and communities in
providing for their children or providing alternative
supports.
Quality and Fairness - A Health System for You
• Supports the Children’s Act (2001) by expanding
family welfare supports, increasing child budgets and
by promoting positive parental programmes.
Research Aims
The research presented in this report was part of a
National Irish Study which aimed to answer the
questions:
‘What is life like for families of people who
have intellectual disabilities in Ireland?’
‘How can life for families of people who have
intellectual disabilities in Ireland be better?’
9
How We Did the Study
We applied for and got ethical approval from the
Research Ethics Committee at Trinity College Dublin.
We set up a research advisory committee.
5 parents of people with intellectual disabilities and 5
researchers from the NIID were in the advisory group.
The advisory group decided what we should research.
The group met a few times each year (2008-2010) to
discuss the study and to make decisions about what
should happen next.
We did two research studies:
We collected information from families in two different
ways, we used:
1. Focus groups
2. A Survey
Study 1.The Focus Groups
We asked people to take part in the study.
Family members were asked to be involved in doing
the research.
We decided to do focus groups with families to find out
about their lives.
We decided to train people in how to do focus groups.
We advertised the training and the focus groups by:
Using the NIID website
Asking organisations to help us to contact families
Over 600 families volunteered to participate in the
research.
10
We decided what questions we would ask the families:
1. Tell us about what life is like as a family for you?
2. Tell us about instances when things have gone really well for
you in terms of “family support” and “family needs”?
3. Tell us about instances that have been especially tough within
the context of “family support” and “family needs”.
4. If you had a choice what one change would you make for your
family to have a good time?
5. What would be the one thing you would do differently for your
family to have a good time?
We trained the families
We told families about:
Opening and closing a focus group
Using open and closed questions
Handling difficult situations
Using technology to record the focus groups
Summarising the main points made and checking
these with the group
We used action learning where people practised the
things they were learning
Training happened on the same day as the focus
groups
Forty-four family members were trained about how to
facilitate focus groups and be co-researchers
We organised focus groups.
Four mothers and one father worked alongside the
NIID researchers as co-researchers and together they
facilitated the focus groups with families.
Nine focus groups happened in Charleville, Clonakilty,
Drogheda, Dublin, Ennis, Kildare, Kilkenny, Rosslare
and Westport.
11
Study 2. The Survey
We decided to do a survey:
1. To find out what life is like for a larger group of
families in Ireland.
2. To find out what was going well (strengths) and what
was not going so well (concerns) in families’ lives.
We developed the Survey
Three mothers and one father worked alongside the
NIID researchers as co-researchers.
Together we developed a survey to send to families of
people with intellectual disabilities in Ireland.
We met as a group 5 times to decide on the questions
to include in the survey. We chose questions based
on:
• What families in the focus groups had told us was
important to them
• Areas parent co-researchers thought were
important
All 69 questions are at the end of the report (Appendix 1).
We used a Concerns Report Survey. This method
allowed families to indicate in the survey how important
the issues were to them and how satisfied they were
with each of them (Fawcett et al., 1982). An example
of one of the questions and how it was scored is below:
How important is it to you that…
How satisfied are you that…
service staff take the time to get to know you
Not
At All
1
2
3
4
5
Very
Not
1
At All
2
3
4
5
Very
We Sent out the Survey
We sent the survey to families across Ireland by:
Using the mailing list of over 600 families
Using the NIID website where people could fill in the
survey online
Asking organisations to send it to families
12
What We Found Out
The Focus groups
70 family members took part in the focus groups. They
told us about their lives and we recorded what they said.
We analysed what they said about their lives by
reading and grouping together things people told us
into themes.
We used the themes to decide what questions we
would put in the concerns report survey.
The Concerns Report Survey
539 families completed the survey, 95 online and 444
by post. Families could miss out any questions that did
not apply to them. Between 136 and 500 families
responded to each of the questions.
We identified the main concerns and strengths:
‘Concerns’ were important things that families were
not satisfied with.
‘Strengths’ were important things that families were
satisfied with.
‘Other’ were questions not rated as important by
families
We compared the strengths and concerns of families
between older and younger children and across
residential setting.
You can see more details about the families who took
part in the focus groups and those who completed the
survey at the end of the report.(Appendix 2]
Findings on the next pages are organised by the
main themes that we found in the focus groups but
also include findings from the survey. Quotes are
taken from the focus groups. Percentages of
strengths and concerns are taken from the concerns
report survey.
These are interim findings. We will add further
findings about the experiences and concerns of
service staff and ideas about how services and
families can work better together later.
13
The Main Themes We Found
1. Family Challenges Across the Lifespan
Families spoke about the changes that
happened throughout their lives that affected
the family.
Families reported that:
•
They felt it was important that their family
member with intellectual disabilities had
early intervention and more training and
educational opportunities to learn new
skills and to work after school.
She has a very good junior cert for her level.
And she is in transition year and I am not sure
will she be permitted to stay on for the further
two years which we would like and which she
would like. (Clonakilty)
From my point of view … the availability of work
for them. They're out in the community working
and it's the best thing. (Charleville)
We constantly say he’s capable of more. (Dublin)
•
Some had fears about their family
member with intellectual disabilities
developing romantic and sexual
relationships.
That’s alright (holding hands), but it’s when it
would go further, I would not… I would be
very, very, very strong against that, because
they are not able. (Ennis)
14
•
Sometimes it was difficult to manage their
family member’s behaviour as they grew
up and that they needed help with this.
•
Many believed their family member got
good health care when they needed it.
•
They felt that their family members were
safe and free from abuse when away from
home.
…in recent years her health has been quite
good so that I wouldn't have had a huge trek
into hospitals (Kildare)
•
It was important to plan the future
supports for their son or daughter for the
time when they could no longer care for
them. Some parents had not done this.
I would have worries about the future for him.
My worry would be that if something
happened to me and he lived on his own that
he could really become a recluse. (Kildare)
•
Some had difficulty ‘letting go’ and being
less protective of their family members
with intellectual disabilities as they grew
up but many were happy that they
encouraged them to make their own
decisions.
… we as parents are without a shadow of a
doubt, overprotective. And it’s only right that
we should be protective. But there’s times
when you have to give them space. (Ennis)
I was very put out about my son’s behaviour when
he was about in his late twenties or so … he’d take
to flopping down on the ground in supermarkets,
and it was totally unacceptable and up in the
centre they’d no way of helping me when I asked
them …trying to cope with that on my own as I did
for a few years was absolutely exhausting. (Dublin)
15
1. Family Challenges Across the Lifespan
Families’ strengths were:
Their family member was
getting good health care
when they needed it
(81%).
They felt their family
member was safe from
abuse in services (86%).
They encouraged their
family member to make
their own decisions (76%).
100
Strength %
86
90
Concern %
81
80
76
Other %
70
60
56
55
55
49
50
41
40
30
33
28
22 23
17
20
16
Families’ concerns were:
14
12
12
10
10
The lack of training (56%)
10
3
2
and education after school
0
(54%).
Training courses
Has a
Get guidance on
Gets good health
Is safe from abuse You encourage your
You have made
are available after
boyfriend/girlfriend
managing
care when s/he
in services
family member to
plans for when you
Not being given enough
school
challenging
needs it
make his/her own
can no longer
behaviours
decisions
provide care
support to manage their
family member’s challeng- Figure 1: Chart of the percentage of families’ strengths and concerns about challenges
ing behaviour (41%).
across the lifespan
Lack of planning for future
care (55%).
16
2. Availability of Information about Entitlements, Services and Supports
Accessing information they
needed was a challenge for
many of the families.
100
90
Strength %
Concern %
80
Families’ concerns about
Other %
getting adequate information
70
were:
57
60
A lack of information
54
49
about available services
50
42
42
(57%).
41
37
40
35
A lack of information that
is easy to understand
30
about financial
17
20
entitlements (54%).
11
10
Getting information about
7
10
disability support groups
0
(42%).
Information is available about You can find Information that
Information about disability
Information is available about
the services your family is
is easy to understand about support groups and networks
different options for your
Getting information about
entitled to
financial benefits
is available
family member
the different options
available for their family
Figure 2: Chart of the percentage of families’ strengths and concerns about the availability
member (49%).
of information
17
2. Availability of Information about Entitlements, Services and Supports
Families said there was a lack of information
available.
the information is not there to find… what
services are in your area and how to access
them … would be an absolute godsend.
(Clonakilty)
Families wanted information about:
Where to get information from.
Their family member’s intellectual disability.
Support groups for families.
What services are available and what
services are like.
The benefits they are entitled to.
Supports and aids available for the family
member with an intellectual disability.
Their rights.
Well from my point of view there's a huge lack
of information and didn't get any guidance as
how to source the information either.
(Westport)
…most of the parents there did not know
that there was a respite, there was a
domiciliary care allowance. (Kilkenny)
…people are not, they can't get accurate
information. They can't obtain it. So, that
information is hidden. It's about funds, it's
about the rights, it's about the services.
(Charleville)
18
Families said that:
they got information by chance, not from
services or professionals.
services should give them information or be
able to tell them where to get information
from.
services should make information more
readily available.
they had to fight to get information.
Families suggested bringing information
together in one place so it would be easy to
access, for example, a single booklet.
Access to information is a huge problem
because most of the information that we
access would have been through making a lot
more noise than maybe everywhere else and
accidentally meeting somebody. (Clonakilty)
The service providers don't provide...They
should all have the information but they don't,
they won't give it to you unless you look for it.
(Westport)
19
3. Being Adequately and Appropriately Supported
Families talked a lot about the supports they and
their family member with intellectual disabilities
received from services, professionals, family,
friends and other parents.
Most families felt their family member was well
cared for. They praised residential, day, respite,
therapeutic, employment and educational
services when they supported their family well.
Many received good support from family, friends,
and other parents.
Families spoke about parents working together
in networks and support groups. These networks
could provide support to families and lobby
government and services for change.
I just want my son to be looked after. (Dublin)
…the school, the mainstream school they’ve
just been absolutely brilliant, and we’ve had to
fight for that, like sending off letters to the
department for a classroom assistant (Dublin)
…she does have an excellent day service
(Dublin)
See a lot of these groups are going with the
same issues so the government, well they're
going in smaller groups. One big group (of
parents) is going to put an awful lot more
pressure on the government to actually
make change and yet you probably haven't
realised that. (Drogheda)
20
Many reported getting timely services that were
well co-ordinated, flexible and responsive to the
family’s changing needs, though this remained a
challenge for some families.
Families also talked about other support
challenges that they had experienced:
A lack of services, in particular respite, home
help and therapeutic support services.
Limited or no choice of services.
Not receiving training from services.
Worries about losing the supports they had
from family, friends or services.
Without adequate support family carers can
become lonely and often feel they have little time
for themselves.
Well my son was diagnosed at two and a half
… And, it had to go through the process of the
HSE, and then to the (service), who both of
them had waiting lists. So two years later, my
son still didn’t have a service. (Ennis)
… where she is now there's no physiotherapy,
speech therapy, there is no occupational
therapy. There is so much missing, you know.
(Kildare)
none of us are getting enough
respite (Clonakilty)
…you have no choice if you don't like the
psychiatrist and the psychiatrist doesn't like
your or your child, you have no choice.
(Charleville)
21
3. Being Adequately and Appropriately Supported
Support strengths identified by
families were:
That their family member is
well cared for where they
live (93%).
Staff were competent
(88%).
They get support from their
family (69%).
Many families felt services
were flexible (61%) and well
coordinated (58%), some did
not (33 & 36% respectively).
Support concerns were that
the families were not getting:
Clinical services (53%).
Respite services (46%).
Home help (51%).
Choice of services (51%).
Training from services
(51%).
100
93
Strength %
90
Concern %
Other %
80
69
70
61
58
60
53
51
50
51
46
42
41
40
37
36
33
28
30
22
20
20
10
9
7
13
7
6
12
6
0
0
Your family
member is well
cared for
Your family
supports you
Services are
flexible
Services are
well coordinated
Your family gets Your family gets
Your family
You are given a
clinical services respite breaks gets home help
choice of
services
Figure 3: Chart of the percentage of families’ who had concerns about the supports
the family receives
22
4. Relationships & Communication with Services & Professionals
Families described their
relationships with services
and professionals as good
relationships.
They reported that service
staff:
• Respected them (85%).
• Involved them (63%).
• Got to know them (70%).
• Gave information in a
sensitive manner (77%).
• Were easy to talk to
(79%).
• Were trustworthy (86%).
• Personalise support
(72%).
• Listen to their family
member (69%).
• Balanced rights and
responsibilities (82%).
For a significant minority of
families, relationships with
services were a concern.
100
Strength %
90
86
85
82
Other %
79
77
80
Concern %
72
70
69
70
63
60
50
40
31
30
20
18
20
11
10
27
24
16
4
7
14
12
10
5
4
2
4
4
4
0
Respect your
family
Involve you in
decisions
Get to know you
Give information Are easy to talk to You trust service
sensitively
staff
Personalise
support they
provide
Listen to your
family member
Balance rights &
responsibilities
Figure 4: Chart of the percentage of families’ strengths and concerns about the
relationships the family have with services
23
4. Relationships & Communication with Services & Professionals
Some families talked about the excellent staff
supporting their family member with intellectual
disabilities who were committed and caring.
Most families reported good relationships with
service staff and professionals.
Families also spoke about the bad relationships
they had, as a result of:
• Not being respected or valued by service
staff.
• Not being included or told what was
happening in their family member’s life.
• Not being consulted about their family
member’s life.
• Not feeling they have a voice in their family
member’s life.
• Their expertise about their family member
being ignored/ overlooked.
• Not being listened to by services.
…people that were working with her were
very passionate about their jobs. There were
people that were really inspirational and
you could see the feedback from C______. You
could see the good work they were doing. It
was terrific. (Drogheda)
I think when they get older … service providers
tend to take over a bit more because they
want them to have independent living skills
which is fantastic… and you are sort of left out
in the cold a little bit. (Clonakilty)
parents … should be listened to. No-one knows
their children better than we do. (Westport)
I’d say the need for the service providers to
listen to parents a lot and also to listen to the
people with disabilities. I was just on about
that this morning, to the service, you know.
They just don’t listen. (Dublin)
24
• Professionals and staff providing information
in an insensitive way.
• Service staff not taking the time to get to
know the family.
• Lack of understanding of the demands
families faced and the support they needed.
Families also spoke about the relationships staff
and professionals had with their family member.
Families wanted people working with their family
member to:
• work in a person centred way.
• get to know their family member.
• listen to, respect and include their family
member in decisions about their lives.
• respect the privacy and uniqueness of their
family member.
• balance the rights of their family member with
their responsibilities.
…obviously we didn't know K_____ was Down
syndrome before she was born and his
reaction … frightened us … by the way he
responded we thought she was going to be the
worst of the worst. It was all very negative.
Nothing was positive when she was born.
(Kilkenny)
But a positive thing or a good thing about
where he's going, they bend over backwards.
They have the person centred plan and they
want to know what you think, what he thinks,
what I think. (Kilkenny)
I think first of all they’re genuinely interested
in what they’re doing and they want to make
that person happy in their environment, so
that one’s very important. Secondly they are
good listeners, and they’re also good talkers.
They tell you what’s been happening. (Dublin)
These things sometimes did not happen.
25
5. Having to Continually Advocate & Fight
Families talked a lot about how they had to
advocate for their family and to continually fight
for services and supports.
Family advocacy involved:
• Trying to raise awareness and improve
attitudes about disability in services,
government and society.
• Checking services to make sure they are
doing the best for their family member with
intellectual disabilities.
• Fighting to access and get better services for
their family.
• Fighting to get funding and entitlements for
their family.
Probably awareness is big point in there.
Even from aspects of fundraising and for
going to look for things for our children. …the
more they're seeing, the more people
acknowledge they're there, I think we need to
kind of push them into public focus more.
(Drogheda)
I'll just pop down every now and again just
to see what's happening. And they knew I
was checking and I didn't care. I was looking
after my son (Kildare)
So, you fight for everything. And that's the
killer battle, parenthood of a child with a
disability. Your time is taken up looking after
the child and yet you have the go to fight for
every service you want. They do not come to
you irrespective. (Drogheda)
26
Families said that:
• They had been fighting a long time.
• Some were too exhausted to keep on
advocating and fighting.
• It was hard for families to fight when caring
for their family member.
• They had to fight because no-one else would
fight for them.
• They shouldn’t have to fight for the things
their family needs.
• Advocacy that failed led to frustration, anger,
resignation, exhaustion and family stress.
• Advocacy that works can help other families.
Not all families felt they needed to advocate and
fight.
Some were thankful for what they had and felt
they shouldn’t complain.
Services had told some families that they should
be grateful for what they have.
A few feared that their family member may
lose services or suffer if they complain.
Everything you get you have to fight for it.
And you have to really fight to hold onto
it...it's a challenge every day (Kildare)
We've got to (fight). Because nobody else
will do it for us. (Kildare)
I just think we as parents shouldn't have to
fight for basic human rights for our children.
(Drogheda)
...like you should be happy with what you
have. You should be grateful. (Ennis)
… I always feared that if I made complaints
or was dissatisfied or anything like that, that
service could be pulled. (Westport)
27
5. Having to Continually Advocate & Fight
Concerns around advocacy and
fighting were:
100
Strength %
90
Concern %
80
Most families had to fight to
get the services they were
entitled to (66%).
Some families felt unable to
complain about services as
they were afraid of the
consequences (36%).
Over half of the families were
concerned that families do
not get together to lobby for
the rights of people with
intellectual disabilities (56%).
Other %
70
66
60
60
56
50
40
30
36
33
26
17
20
10
8
4
0
You get the services without
having to fight for them
You can complain about services Parents get together and lobby for
without being afraid of the
the needs and rights of people with
consequences
disabilities
Figure 5: Chart of the percentage of families’ strengths and concerns about
advocating and fighting
28
6. Attitudes towards Disability and the Family
Families reported how others
treated their family.
Attitudinal strengths were:
• Their family member got
along with people in the
community (83%).
• Their family member was
welcomed in community
services and facilities (71%).
• Those in the community were
understanding of their family
member’s disability (76%).
• There family was treated the
same as other families
(68%).
Community attitudes were also
a concern for some.
100
Strength %
90
Concern %
83
Other %
76
80
71
68
70
60
50
44 45
40
27
30
22
19
20
11
11
6
10
7
5
5
0
Community services
and facilities make
adjustments to include
people with an
intellectual disability
Gets on with people in
his/her community
Community services
and facilities welcome
people with an
intellectual disability
People in your
neighbourhood are
understanding of
disability
Society treats your
family the same as any
other family
Almost half of the families (45%) Figure 6: Chart of the percentage of families’ strengths and concerns about the
were concerned that community attitudes towards disability and the family
services and facilities did not
make adequate adjustments so
that people with intellectual
disabilities can be included.
29
6. Attitudes towards Disability and the Family
Families spoke about the good and bad attitudes
they had experienced from society, people in
their community, service staff and professionals,
politicians and their family and friends.
Parents talked about wanting their children to be
recognised as people who shouldn’t be made fun
of.
Some parents and siblings said that attitudes
have improved compared to how they were in
the past. But many families had still experienced
negative attitudes, these were:
• Not wanting to be around people with
intellectual disabilities and excluding them.
Families found this upsetting.
• Not knowing about, caring about or being
interested in people with disabilities.
• Feeling awkward, scared or embarrassed
around people with intellectual disabilities.
This was sometimes because people didn’t
know how to interact with them.
it's lovely to see my son go out. We go into a
shop, people would talk to him. It is
absolutely lovely. (Westport)
you can't imagine what it's like. I live in a
small village, to see her walk out alone and
nobody speaks to her…It's the biggest single
hurt to parents across everything is the fact
that their child is not acknowledged.
(Westport)
People do not want to associate with anybody
with a disability unfortunately (Westport)
…raise awareness of what intellectual
disability means. Then people are not
dangerous or I don't know, contagious or
whatever you know. (Charleville)
30
• Believing people with intellectual disabilities
are bold and troublesome when there is no
physical sign of their disability and that their
parents lack parenting skills.
• Believing people with intellectual disabilities
are cute or angelic and patronising them.
• Believing having a child with intellectual
disabilities is shameful. This was an attitude
held by parents themselves in the past.
• Not acknowledging families’ concerns and
worries.
• Not acknowledging the challenges families
face.
• Believing parents are naïve when they think
their child has the potential to achieve more.
Families said that negative attitudes were often
because of a lack of knowledge and awareness.
Some families spoke about positive attitudes
people had expressed, the importance of having
contact with people with intellectual disabilities,
education to increase understanding, knowledge
and awareness and through positive
representations in the media.
… my son looks perfectly normal, and from
an early age you heard stuff like ‘oh he’s a
bold little brat. (Ennis)
We were brought up to feel different because
our brother was different. And I’m very glad
to see that, that day seems to have almost
gone. (Ennis)
I did try to argue with them (services) and
was told there was no options and that there
was also people much worse off than myself.
(Kildare)
other parents from her class would come up
to us, and say I’m so delighted your daughter
is in our class, because it’s enhanced our
child’s life and behaviour. (Dublin)
31
7. Policy, Government Support and Funding
Families also spoke about the implementation of
policies, government support and funding issues
they had faced when caring for their family
member with intellectual disabilities.
They talked about some of the challenges they
had faced in Ireland trying to improve the lives of
people with an intellectual disability and their
families, these included:
Government and services failing to implement
policies and plans to improve things for
people with disability and their families.
Politicians and government workers not
knowing about or caring about people with
disabilities.
Making decisions without thinking about
people’s lives.
Government not being prepared to meet the
raised expectations of parents and people
with intellectual disabilities.
Government not being prepared to give
people with intellectual disabilities their rights.
…there was a proposal that every person with
disabilities would have a life plan … And that
… the appropriate services would be available
to them at the appropriate times… when this
was brought in we felt this was a great thing.
But in actual fact, we never heard any more
about it after that. (Drogheda)
You know, they're writing off your children.
They not trying to give them an educational
option or an employment … oh they're
disabled, they don't figure. (Drogheda)
…health service is built from the top so when
you get to the bottom there's nothing. There's
no money. Instead of building it from the floor.
You build it from the patients and people with
disabilities. You build around them and then
you work your way up. We don't. (Drogheda)
She is a citizen of this country. She should be
entitled to a service that suits her. (Rosslare)
32
They said it was important to lobby politicians
and the government for change.
Many of the challenges reported were about
funding. Families reported that:
Money was not spent appropriately, with not
enough spent on direct care and support.
They were frustrated by the bureaucracy that
made getting and keeping funding difficult.
They should have more control over how
money is spent.
Individualised funding would give families
more control and they wanted to know more
about different ways funding can be allocated.
They also suggested ways of improving things:
More person-centred working.
Planning for the changes that happen to
families across their lives.
Governments providing a forum to listen to
people.
Sharing information about people’s lives to
create a connection with policy makers.
Getting a politician on your side.
Spend less money at the top with all these big
managers with their hundreds of thousands on
wages, they can manage nobody. (Drogheda)
We’d terrible problems, sure M____ loves, loves
the day he goes out to work, he loves, it’s the
thing of his life but last year the medical card
was taken from him because he was making
fourteen pounds. (Dublin)
Yeah I think parents should have more input
into what's happening with the money and
where it's going and have more say in what
the child could be doing. (Clonakilty)
…but hopefully in the future, individual
funding would come … and then my family
would be the employers. (Dublin)
You cannot do it on your own. You have to
have people behind you. You get a politician
or two behind you… if you don’t you’re in
trouble. We have a very good politician here in
____, who has a handicapped child and fights …
So, without him we’d be in trouble. (Ennis)
33
7. Policy, Government Support and Funding
Funding and how money was
spent concerned many of the
families who responded to the
survey.
Concerns about funding and
resource allocation were:
Government not providing
enough money for services
for their family (71%).
Families not knowing how
money for their family
member is spent (58%).
Families wanting more
control over funding (57%).
Money for services being
used inappropriately (47%).
Families being unable to use
resources flexibly to meet the
their needs (55%).
100
Strength %
90
Concern %
80
Other %
71
70
58
60
57
55
47 47
50
40
34
32
27
30
20
20
10
16
9
12
11
6
0
The government
provides enough
money for services
You know how the
money services get is
spent
Your family given
control of the funding
Money for services is
used appropriately
Resources can be
used flexibly to meet
the needs of your
family
Figure 7: Chart of the percentage of families’ strengths and concerns about funding
and government support for people with disabilities and their families
34
Summary of the Main Concerns & Strengths
Tables 1 and 2 below show the main concerns and strengths the families
identified in the concerns report survey.
Table 1: The main strengths identified by families in the survey
QUESTIONS
Strength
%
Concerns
%
Your family member is well looked after and cared for in the place
where s/he lives
93
7
Your family member is happy with his/her life
91
8
People who work with your family member are competent
88
9
86
12
86
12
85
11
Your family member gets on with people in their community
83
11
Services balance rights and responsibilities sensibly
82
14
Your family member receives good health care when s/he needs it
81
16
Your family member is safe from abuse when s/he attends
services away from home
You trust the people who look after your family member when
s/he is in respite care
People working in services show respect for your family’s values,
beliefs and culture
Table 2: The main concerns identified by families in the survey
Strength
%
Concern
%
20
71
26
66
27
57
28
56
25
54
You are provided with home help to help you
20
51
Family carers are invited to attend training courses provided by
services.
22
51
QUESTIONS
The government provides enough money for services
You get the services you are entitled to without having to fight for
them
You and your family member are given control of the funding
allocated for the things that you need
Training courses are available so that your family member can
learn new skills after school
Post secondary school educational courses are available so that
your family member can learn new skills
35
Comparisons of Strengths & Concerns
We compared the most important concerns and strengths
the families had identified in the survey between:
• Families whose sons and daughters were older and
younger and
• Those who were living in the family home and those
living in their own home, in community group homes
and more institutional settings.
Age
Families caring for younger family members with
intellectual disabilities (younger than 19 years of age)
were significantly more concerned about:
• The lack of education and training courses for their
family member to learn new skills after school.
• Having to fight to get services.
• Not being invited to training courses provided by
services.
• The government providing enough money for
services for people with intellectual disabilities.
Those caring for family members over the age of twenty
were significantly happier with:
• How their family member got along with people in
their community.
• How services balanced the rights and
responsibilities of their family member.
Residence
Families were more concerned about the lack of
education courses when their family member lived with
them or a group home than when they lived in a
residential campus, hospital or an institutional setting.
Those living with a family member with intellectual
disabilities were also significantly more concerned about:
• Having to fight to get services.
• The government providing enough funds for
services and how the money received by services is
spent.
36
Limitations
There are some limitations in this report which should be
acknowledged.
• More families responded to the survey from
Connaught (30%) than other provinces, and less
from Leinster (43%) than we would expect.
• There were fewer non-Irish respondents in the
survey study than would be expected in the wider
Irish population.
• More families from rural locations, completed the
survey than would be expected.
Future Research Work
Although these two studies have told us a lot about the
lives of families of people with intellectual disabilities in
Ireland, there are still more things that we need to find out
to make life better for people with intellectual disabilities
and their families.
Some future studies that would follow on from this study
are:
Looking at how the concerns of families compare with
those of people with intellectual disabilities, service staff,
professionals and policy makers.
Looking at the experiences of working with families of:
Direct care staff working in residential, day and respite
services.
Professionals working in multi-disciplinary teams, for
example social workers and speech and language
therapists.
Management staff and Directors of services.
37
Conclusions
The studies presented in this report found that families of
people with intellectual disabilities have good times and
bad times and these are related to the things that are
happening in their lives and the support they receive from
family, friends, their community, service staff,
professionals, politicians and policy makers.
Life is good when families have opportunities, good
quality support and are happy and healthy.
When life is not good, it is often because of the barriers
and challenges that the families encounter in getting
services, information and supports for their family.
Many people with intellectual disabilities are cared for
and supported by their families.
For this care to be successful it is important that families
are treated fairly and get the supports they need.
Services supporting families have changed and must
continue to do so. In our study families said they needed:
More support at critical times throughout their family’s
life and more support for parents with younger children
who live at home.
More accessible and available information about
services, supports and entitlements.
Appropriate support from services, family, friends, the
wider community and the Government.
To know their family member with intellectual
disabilities is well supported and has opportunities to
be part of the community.
Respect and consideration from services and
professionals and to be listened to and involved in
decisions about their family member.
To get services and support without having to fight all
the time and be free to complain without fear.
Greater transparency and control over the funding for
their family member with intellectual disabilities.
Government and policy makers to work towards
improving things for people with intellectual disabilities
and their families.
38
Who wrote this report:
Darren Chadwick
Marie Curie
Research Fellow
Address for correspondence:
Edurne García Iriarte
Marie Curie
The National Institute for
Research Fellow
Intellectual Disability,
School of Social Work
Prof. Roy McConkey
& Social Policy,
Professor of Nursing Trinity College Dublin
4th Floor, 3 College Green,
Dublin 2, Ireland.
Andrew Turner
Research intern
39
References
Department of Health and Children (2000) National Children’s
Strategy. Our Children, Their lives. Dublin, The Stationary
Office.
Fawcett, S.B., Seekins, T., Whang, P.L., Muiu, C. & de
Balcazar, Y.S. (1982). Involving consumers in decision-making.
Social Policy, 13(2), 36–41.
Government of Ireland (2005). The Disability Act 2005.
Stationary Office, Dublin.
Government of Ireland (2001) Quality and Fairness: A Health
System for You. Stationery Office, Dublin.
Turnbull, A.P. Friesen, B.J. & Ramirez, C. (1998). Participatory
action research as a model for conducting family research.
Research and Practice for Persons with Disabilities (formerly.
JASH), 23, 178–88.
Picture sources
Microsoft clip art
Change Picture Bank and Change Health Picture Bank,
CD containing pictures, available from CHANGE
[http://www.changepeople.co.uk]
40
Appendices
Appendix 1: Percentage of families who rated questions
as strengths and concerns in their lives
QUESTIONS
[N refers to the family member with intellectual disabilities]
Information about disability support groups and
networks is readily available to you
You have people to talk to about your worries or
concerns about N
You get a chance to talk with other family carers of
people with an intellectual disability
Parents get together and lobby for the needs and
rights of people with disabilities
The rest of your family helps you to look after N
You have time for yourself outside of the caring role
You have made plans for when you can no longer
care for N
Family carers are invited to attend training courses
provided by services.
You get appointments with people in services at times
that suit you
N is getting or has had a mainstream education
Schools adequately prepare N for life after school
Post secondary school educational courses are
available for N so that s/he can learn new skills
Training courses are available for N so that s/he
learns new skills after school
N does activities s/he enjoys throughout the day away
from home
N has an ordinary paid job
N has opportunities provided to help reach his/her full
potential
Services encourage the development of N
You encourage N to make his/her own decisions
N makes decisions about his/her life
N chooses the people s/he wants to live with
N decides where s/he lives
You are given a choice of services to suit you and N
Services involve you in decision making around N
N is supported to have friendships outside of the
family
N has a boyfriend/girlfriend who s/he sees regularly
N gets married or lives with a partner someday
Strength Concern
%
%
41
42
Other
%
17
57
31
12
47
26
27
33
50
17
69
54
33
22
31
55
9
15
12
22
51
28
58
31
11
49
45
25
24
39
54
28
17
21
28
56
17
69
16
3
18
50
41
40
41
10
56
76
50
54
57
37
63
59
37
14
25
30
24
51
31
31
6
10
25
17
19
12
7
10
22
18
23
22
55
60
41
QUESTIONS
Community services and facilities welcome people
with an intellectual disability (e.g. shops, leisure
centres, pubs, cinemas etc.)
People in your neighbourhood are understanding of
N’s disability
N gets on with people in his/her community
Community services and facilities make adjustments
to include people with an intellectual disability
N has support to be part of the community
Society treats your family the same as any other
family
Public transport is available for N to use when s/he
needs it
Information is available about different options for N
(e.g. residential, day activities, respite, therapeutic
services etc.)
N is well looked after and cared for in the place where
s/he lives
N is safe from any form of abuse when s/he attends
services away from home
People who work with N are competent
Services balance the rights and responsibilities of N
sensibly
Services have sufficient front-line staff
Services manage turnover of staff in a well-planned
and sensitive manner
Services are flexible, responding to your family’s
needs
Services are well co-ordinated, sharing information
about N with each other (e.g. residential & day
services, speech & language therapy, psychology,
special education & schools)
Services listen to N and learn what is important to
him/her
Services personalise the support they provide to N
Services and professionals adapt to what is important
to N
Services keep you informed about what is happening
in N’s life
Services and professionals provide information to you
about N in a sensitive manner
Service staff take the time to get to know you
People working in services are easy to talk to
Strength Concern
%
%
Other
%
71
22
7
76
19
5
83
11
6
44
45
11
46
43
12
68
27
5
55
32
12
42
49
10
93
7
0
86
12
2
88
9
2
82
14
4
58
35
7
61
33
6
61
33
7
58
36
6
69
27
4
72
24
4
66
29
5
71
24
6
77
18
5
70
79
20
16
10
4
42
QUESTIONS
People working in services show respect for your
family’s values, beliefs and culture
You can complain about services without being afraid
of the consequences
N gets the clinical services s/he needs when s/he
needs them (e.g. speech & language therapy,
physiotherapy, OT, psychology, nursing)
N benefits from the therapy services s/he gets.
You are given guidance on managing N’s challenging
behaviours
N receives good health care when s/he needs it
You are able to get respite breaks when you and N
need it
You trust the people who look after N when s/he is in
respite care
N enjoys and benefits from respite breaks
You are provided with home help to help you to look
after N
Resources can be used flexibly to meet the needs of
your family
You can find Information that is easy to understand
about the financial benefits you are entitled to
Information is available about the services you and N
are entitled to
The government provides enough money for services
for N
You know how the money services get for N is spent
Money for services for N is used appropriately
You and N are given control of the funding allocated
for the things that you and N need
You get the services you are entitled to without having
to fight for them
N is happy with his/her life
You are happy with your life
Strength Concern
%
%
Other
%
85
11
4
60
36
4
41
53
6
70
25
5
49
41
10
81
16
3
42
46
13
86
12
2
76
20
4
20
51
28
34
55
12
35
54
11
37
57
7
20
71
9
32
47
58
47
11
6
27
57
16
26
66
8
91
75
8
19
2
7
43
Appendix 2: Background information about the families
who took part in the focus groups and completed the
survey
Background characteristics of the family respondents who participated in the
focus groups (N=70)
Background Information
N
%
RELATIONSHIP TO FAMILY MEMBER WITH ID (N=70)
Mother
Father
Sister
50
15
5
71.4
21.4
7.1
AGE (N=68)
30-39
40-49
50-59
60-69
6
25
17
20
8.8
36.8
25.0
29.4
EDUCATION (N=64)
Second Level
Non-Degree
Degree
Masters
25
23
12
4
39.1
35.9
18.8
6.3
EMPLOYMENT(N=66)
Full time
Part time
Not employed/full time carers
19
17
30
28.8
25.8
45.5
AGE OF FAMILY MEMBER WITH ID (N=69)
0-6
7-18
19-29
30-39
40+
6
18
22
20
3
8.7
26.1
31.9
29.9
4.3
SEVERITY OF DISABILITY (N=70)
Mild
Moderate
Severe
26
27
17
37.1
38.6
24.3
RESIDENTIAL SETTING (N=69)
Home
Residential Services
53
15
76.8
21.7
1
1.5
(including community group homes, residential centres, psychiatric hospitals
and intensive)
Independent
44
Background characteristics of the family respondents who completed the
concerns report survey (N=539)
Background Information
%
N
GENDER
Female
Male
80
21
383
99
AGE GROUP
Under 35
35-49
50-64
64-79
80+
7
40
36
15
2
36
195
172
71
8
NATIONALITY
Irish
Other
94
6
454
30
HOUSEHOLD INCOME
State Benefits/ pension
Less than 33,000
More than 33,000
30
21
48
130
91
207
LEVEL OF EDUCATION
Left school at 15 or younger
Leaving Certificate
rd
3 Level/ Postgraduate
22
30
48
104
141
224
RELATIONSHIP TO THE FAMILY MEMBER WITH ID
Mother
Father
Brother
Sister
Foster/adoptive parent
74
14
4
8
1
343
66
19
35
4
LONE CARER
MAIN CARER
29
89
92
324
FAMILY HOME LOCATION
Urban
Rural
36
64
170
297
PROVINCE/ HSE REGION
Leinster
Connaught
Munster
Ulster
HSE West
HSE South
HSE Mid-Leinster
HSE North-East
43
30
22
5
37
22
17
10
192
135
98
23
164
99
78
45
45
Background characteristics of the family member with an intellectual disability
of those families responding to the concerns report survey
Background information
%
N
GENDER
Female
Male
45
55
216
260
AGE GROUP
0-4
5-9
10-14
15-19
20-34
35-49
50-64
65-79
80+
7
15
13
13
29
17
4
1
0
32
68
60
57
131
77
20
4
2
HOME IS MAINLY
Family home
Group home in community
Residential centre, hospital or institution
Own house in community
77
11
7
5
345
50
30
24
DAY ACTIVITIES
Home based
Sheltered workshop
Day/ Training centre
Regular employment
Supported employment
Mainstream school
Special school
College/ University
37
23
21
19
11
6
3
2
162
100
94
84
48
25
11
10
SERVICES USED IN PAST YEAR
GP/ Doctor
Dentist
Hospital
Education/ Schools
Day/ Training Centres
Respite/ Home Help
Speech and Language Therapy
Occupational therapy
Physiotherapy
Psychology
Community Nurse
Dietician
Social Work
Psychiatry
Specialist Behavioural Support
Social/ Leisure Clubs
Advocacy Services
84
62
43
38
37
36
38
29
26
23
12
21
14
10
10
43
7
405
288
200
176
161
162
172
128
114
101
52
93
59
46
42
193
31
46
DISABILITIES, SUPPORT & HEALTH NEEDS
Speaking
Seeing
Hearing
Physical disability
Mental Health
Autism
Epilepsy
40
9
8
18
9
25
18
181
39
36
80
39
111
79
LEVEL OF INTELLECTUAL DISABILITY
Borderline/ Mild
Moderate
Severe/ Profound
20
59
22
92
271
100
47
© National Institute for Intellectual Disability,
Trinity College Dublin; 2010
48

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