Issues & challenges supporting
rural families raising
children with disabilities
in remote regions of NSW.
Dr. Kathleen Tait (USQ)
&
Professor Rafat Hussain (UNE)
Introduction
• Caring for a child with a significant impact
intellectual or developmental disability can be
extremely exhausting for all family members.
• The concept of respite care ( or short breaks ) was
designed in part, to give the family a break.
• However, when a family caring for a child with a
disability lives in a rural and remote area, access to
such services can be in short supply.
Background
• If stress reduction, is touted as a major benefit of
respite care, then it is important to examine whether
or not this is a likely outcome for rural families with
children with disabilities seeking respite services.
• Does respite care reduce parental stress, improve
parental emotional well-being, and increase the
quality of family life?
•
Or …is the strain of accessing acceptable respite
services causing more burden to rural & remote
families?
Purpose of the study
• Seeking answers to these questions directly from the
consumers, may enable support service
professionals to design better respite care services
for children with disabilities living in a rural/remote
location in NSW, Australia.
Publications
• Tait, K. & Hussain, R. (2014 – submitted). Do short breaks
(respite care) make a difference to the emotional wellbeing and quality of family life for families raising
children with intellectual disabilities in rural and remote
Australia? An analysis of parent responses. Journal of
Policy and Practice in Intellectual Disabilities.
• Tait, K. & Hussain, R. (2014 –submitted). You gotta have a
service, before you can have a gap! Using quality of
family life issues to explore parents’ experience of
educational service provision for children with
developmental disabilities in rural Australia. International
Journal of Disability, Development and Education
(IJDDE)
The context
• The New England region of northern NSW consists of large
areas of rugged country, as well as an extensive plateau.
• The region’s population is dispersed among large regional
towns of 20–40,000 residents, smaller towns of
1–3,000 residents, and isolated rural communities of less than
1,000 people (Wilkinson, 2014).
• In addition, some people live on remote properties (farms)
many kilometres from their nearest neighbours, and hundreds
of kilometres from towns.
• One participant explained: When we lived in Collarenebri, it
was a 300 kilometre round trip to the supermarket (Interviewee
No 2).
Project design
• Participant sample: Families
registered with regional
disability providers, including
the regional office of the NSW
state disability services.
• Phase 1: Demographic info &
survey (FQoL) – postal invite
• Phase 2: Optional interview
• Family Quality of Life Scale
• assesses parents’ perceived
satisfaction with their FQoL .
• Domains: family interaction,
parenting, emotional
wellbeing, physical/material
wellbeing and disability
related services).
Respondent profile
• Predominantly female: 96%
• mothers [84%], fathers [4%]; grandparents [8%] and
foster parents [4%]
• Mean age of mothers: 46yrs [23-62 years]
• Family structure: 2 parents cohabiting [84%]
•
• Combined family income: < $25k [33.3%]; 25-50k
[19.6%]; 50-100k; [35.3%]; > 100k [11.8%]
• No. of family members living at home: 2 [9.8%]; 3
[23.5%]; 4 [21.6%]; 5 [31.4%]; > 6 [13.7%]
Children’s profile
•
•
•
•
ASD (n= 14, 28%) [Autism (n=7) & Asperger’s Syndrome (n=7)]
Down Syndrome (DS) (n=6, 11.7%)
Global Developmental Delay (n=6, 11.7%).
A range of other individual diagnoses (n=25, 49%)
• males (62.7%); females (37.3%).
• Mean age: 9.5yrs [3-18 years]
• 9.8% (n= 5) were of average intelligence,
• 35.2% of children (n=18) below average intelligence
• The majority of parents (n=28, 54.9%) indicated that they
just did not know.
Results - FQoL
• The participants (N=51) were asked to rate their
satisfaction with their family’s quality of life using the
FQoL survey (2005).
• The results revealed that these families rated their
satisfaction as being between 55% – 65 % at or
above the mean (50.00) for 4 out of 5 of the FQoL
variables (Tait & Hussain, 2014).
• This indicates that participants’ were moderately
satisfied with their level of: family interaction,
parenting, physical and material well-being and
disability related support items.
However!
• For the emotional wellbeing (EWB) variable,
only 24 out of 49 families
(49%) scored at or above
the mean (50.00).
• The issues that dominated
this domain related to the
allocation and delivery of
resources and support.
Q3. My family has the support we need to relieve stress.
• To get any respite? I’ve
gotta go all the way into
town, into Armidale, to
do that sort of thing.
That’s an hour away, and
everybody thinks like, “Oh
its only an hour from
town”, but it’s up and
down hills and around,
and up, and I’ve hit ‘roos
before. It’s too hard for
me to go in there
(Interviewee No 12).
• One of my biggest issues
at the moment is
accessing respite that I
think is appropriate. First
of all getting workers in
this area, like getting
someone to come to my
home and do respite inhome, which is my
preferred form of respite,
is very difficult. There is
not a lot of people that
want to travel out of town
(Interviewee No 5).
You gotta have a service, before you can have a gap!
• Respite doesn’t happen, because they don’t want to give me
the dates….or there’s no workers. Well, why tell me I can get
21 x days a year for him, and then not be able to give me the
dates I want? (Interviewee No 1).
• You have sort of got to rev yourself up to “Oh God! not this
again”. I rang the Commonwealth Care Respite Centre. I
said, “We are going to the Gold Coast for an (autism)
conference and can we have the person (to care for child),
that we had last time, because she was fabulous”. I was told
“Oh well, I don’t know? No, No.”. I said, “You guys employed
her 18 x months ago to do exactly this. What do you mean
no, no, no?”. She is like “Oh well things have changed now”.
She said, “Send me an email to Hunter New England Health”.
I thought “Far out!” How are you now Hunter New England
Health, when you were a Commonwealth Carer Respite
Centre? (Interviewee No 15).
Worries about quality of care received
• My (18 yr old ) would take games with her, having been
told by a case worker “Oh, they'd love to have you,
because you can play games and things'. Well actually,
they'd sit her in front of the television and go out and sit
on the verandah and have a smoke and a cup of tea
with the other worker. So (18 yr old) would behave
terribly, to get their attention, because she'd been told
that they'd play games with her. She took her UNO with
her every time, but no-one ever played a game with her.
No-one! I don't want somebody sitting out on the
verandah having a smoke, when my daughter's inside
wanting someone to give her some company. That's not
respite for me! (Interviewee No 6).
A break will be good for you.
• People just assume it is fine and that a break will be
really good for you. My son is going away to live
with strangers for a week….. and I am not good
with it! He is my eleven year old. And to live in this
place that has got no carpet on the floor, almost
like a very sterile environment, and to not really be
doing anything very interesting… (Interviewee No
7).
Q13. My family has outside help available to us to take care
of special needs of all family members.
• From the beginning, you know, if (child) needed to
go to the toilet or something and needed some
help, they'd (vacation care teachers) come and
get (sibling) to take her. Or, if (child) was getting
upset, they'd get (sibling) to come and settle her
down. It's like – “She's in year 4, you know, it's not
her job. It's your job – please don't do this!”. But
that kept happening (Interviewee No 8).
So - why aren’t families using
(respite) service support ?
• While most parents
reported receiving
funding for some
version of respire
care (i.e., residential
care, in-home care,
vacation care, etc.),
in almost one third of
these cases (n=18),
the offer had not
been taken up,
because families did
not find the service
on offer helpful.
Type of
Short Break Support
Hours
received
Mean (SD)
In home care short break
service
0.81 (2.85)
Out of home short break
service
3.33 (8.8)
Additional
Families
Hours
receiving
requested
support
Mean
Number
(SD)
(Percentage)
1.66
9 (18.4%)
(3.95)
3.27
(5.64)
24 (49%)
Service information confusion
Participants spoke of the many ……
• rule changes to funding allocations,
• changes to names of agencies, and
• being confused by what funding body they were
eligible to access, etc.
• In addition, some parents explained that there were
barriers to being able to use what funding was
available, in the way that they wanted, in order to
meet their families’ needs.
Services do not match family need
• Like they made this rule that you can’t use it (respite
care) on Sundays. Well, I only want two hours on
Sundays, ‘cause the pay rate (for my work) is more.
You know, I want 2 x hours on Sunday, rather than 4
x hours on Monday. That is more important to me.
So they make little rules like that. They’d sort of say,
‘Yes, it’s for you to use. This is your service. We want
to help you’…but a lot of services are not matching
our needs particularly well (Interviewee No 9).
Services do not meet children’s needs.
• They (respite care
workers) don't manage
her well, so she has
these terrible
eruptions…and that
sets a pattern and then
she knows that's how
she can get out of the
situation, 'cause they
ring us to pick her up
(Interviewee No 10).
• I just feel sick at the
thought. Respite needs
to be respite, you need to
feel comfortable about
them being there and if
he is happy and safe. I
don’t feel like he is
treated as an individual
there and I know he is
distressed. He came
home one time and he
was just hitting himself the
next day, all day. And
that was when we
realized that we just
weren’t going to use it
again (Interviewee No 3).
Inappropriate application forms
• I’ve done an ACAT Assessment for my 84-year old father
and a Post-School Assessment for my 18-year old son
(with severe autism) and they were both almost, the
same questions. … to the point where… I filled in the
questionnaire for my son and one of the questions was
“Does the ‘Client’ - note! no longer a student, even
though it’s the Department of Education doing it. Does
the ‘Client’ have any dangerous behaviors? For
example; Smoking in bed”. Now, not many children with
autism smoke in bed when they live at home!
• So (adult child) was being assessed for his level of need
for skills based on an education system that would fit him
for the future….whereas my father was being assessed
for the support that he would require medically and
otherwise in a nursing home situation. How do you
equate those two things? (Interviewee No 11).
Parent burden increase
• Parents described how even though technically there
was funding available to families for respite services, there
were constant problems with:
1. long and complicated application processes; (resulting
in parents either not being able to access this money);
2. long waiting periods to get funds reimbursed;
3. the amount of funding allocated to them was not
adequate for their child’s or their family’s needs;
4. Limited number of care workers available (on requested
dates);
5. services being geographically distant;
6. Parents were also worried about the quality of care &
suitability of activities on offer in respite care centres for chn.
One size does not fit all
 This cohort of parents believe that currently, there is a
‘one size fits all’ approach to respite care service and
that as a result, respire service provision in rural and
remote regions of NSW is not adequately meeting their
child’s needs.
 There is this ‘generic’….”This is what happens for all
people with disabilities'. “ Instead of… “all the
disabilities are so different”. Respite care has to be
specific to their needs, not just ‘generic disability’
services! (Interviewee No. 8).
Conclusion
Respite care was designed to enhance the QoL of those families
who are raising children w/disabilities – not increase their burden.
Changes that would help more families access respite service
provision in rural and remote areas are :
• Being less service-centered, in the approach to offering respite
care to families of children with disabilities.
• Increasing distribution/access to information/updates about
services & agencies & rules of funding access.
• Simplifying the current forms (complicated & time consuming)
and make sure that the questions on the forms are child
oriented.
• Seek parent feedback/evaluation of respite service: Address
the reasons why parents have concerns about the quality of
care that their children receive at respite, and
• Seek parent ideas or request professional development on a
range of child-friendly activities for children in respite.
How to contact me?
• Dr. Kathleen Tait
• kathleen.tait@usq.edu.au
• NB: I am based in Sydney.
Thank you!
Acknowledgements
• Project: Vulnerability and Rurality: Parental
perceptions of quality of life for families and
children with disabilities.
• The project was funded by an AFRID project grant
and logistical support was provided by NSW ADHC
regional office and local disability organizations.
• The authors acknowledge the contribution made
by the Collaborative Research Network on Mental
Health and Well-being in Rural Communities,
supported by the Department of Industry,
Innovation, Science, Research and Tertiary
Education, Commonwealth Government of
Australia.