Out-of-Home Placement
Supporting Families: Family
Well-being and Children with Disabilities (2003)
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Llewellyn, G., Thompson, K., Whybrow, S., McConnell,
D., Bratel, J., Coles, D., & Wearing, C. (March
2003). University of Sydney. An ARC SPIRT collaborative
research project conducted by the University of Sydney
in collaboration with the Spastic Centre of NSW.
Background
Around Australia policy directives and service
agencies are concerned with finding effective and
efficient ways to encourage families with children
with disabilities
to continue caring for their children at home.
To investigate the factors influencing out-of-home
placement
in 1995-1996 the Community Support and Respite
Project funded by the then Commonwealth Department
of Human
Services and Health conducted a study with families
with very young children aged from birth to 6 years.
This study demonstrated that without exception
the primary desire of families was to care for their
children at home. Despite this family goal, one-quarter
of the families had already sought or were considering
placement for children in this young age range.
For
these families there was a lack of congruence in
everyday family life between meeting the needs
of the disabled child and those of other family members;
there was a lack of integration of the disabled
child
into everyday family life and the wider community;
and, parents held concerns about the effect of
the disabled child on their siblings now and in the
future
(Llewellyn et al., 1999 1).
A body of research has emerged on the relationship
between the ongoing stress associated with family caregiving
and the decision to seek out-of-home placement. Three
multidimensional variables related to family stress
have been identified which appear to contribute to
out-of-home placement:
- Child characteristics - the
older and larger the child and the more challenging
the child's behaviour,
the more likely families are to decide they can
no longer cope
- Family characteristics - families
who experience more stress and have heightened
concerns about
the health and well-being of their non-disabled
children are more likely to seek placement
- Support
characteristics - for those families who lack support
from family members or friends
and have little help with child-minding or
respite care,
the risk of seeking out-of-home placement of
their child is considerably increased.
Family well-being or family quality of life provides
another avenue for understanding out-of-home placement
decisions. Investigating family well-being in families
of children with disabilities has the potential to
focus on the diversity of family experiences and provide
a useful insight into the caregiving experience. Understanding
differences in family well-being may also assist in
explaining why some families take action and seek out-of-home
placement for their child with a disability while others
do not. Such an approach provides a contrast to much
of the literature on families with children with disabilities
which has focused more on stress and burden than on
the positive aspects of families' lives.
Aim
The broad purpose of the research project was to
investigate family well-being and out-of-home placement
tendency
among families with children with disabilities
and high support needs aged 6-13 years. A better understanding
of differences in family well-being and the factors
influencing this was sought.
Specifically the project aimed to:
- Investigate family well-being as seen through
the eyes of the primary parent-carer and within
the context of everyday family life;
- Investigate
the relationship between family well-being and family
decision-making about out-of-home placement;
and
- Explore the usefulness of the concept of family
well-being in alerting service providers to families
'at-risk'
and particularly those at risk of placing their
child with a disability out of home.
Methodology
Eighty-one families from the Northern Metropolitan
and Eastern Sydney regions participated in the study.
First and second follow up interviews with these
families took place through 1999-2000. The Ecocultural
Questionnaire and Ecocultural Family Interview format
guided the semi-structured interviews2. This format
permitted a narrative open-ended interviewing approach
across ten domains of family life. The interview
format was conversational in style and provided the
opportunity for the primary parent-carer (most frequently
the mother) to "tell their story". Interview
participants also completed several standard measures
on health, coping, child health and out-of-home placement
tendency.
Findings
- The Families
- Most families in this study were two
parent families with higher educational qualifications
than the
general population and a better employment rate than other
carers in NSW
- Although few families had low incomes,
around 30% of the families reported insufficient
income to
meet their needs
- One in two of the children attended special
schools, a figure six times higher than the NSW
percentage
and one that suggests these children have high to very
high support needs
- The families were frequent
users of respite services with over half (59%)
of the children attending
some form of respite at least monthly, and over a quarter
(28%) attending at least fortnightly
- Overall,
children attending special schools and children
who were placed in respite care at least fortnightly
were perceived to be more demanding or unsettling
to established everyday routines
- Primary parent-carers were generally satisfied
with education professionals although less
so with the education, health and community care
systems
- Health and Coping Style
- The primary parent-carers
in the families in this study suffered considerably
poorer health in
comparison with the Australian population norms. Poor mental health
in particular was hindering their
everyday functioning.
- Most primary parent-carers
liked to 'deal with any problems arising' and
turned to
significant others for support, that is, they used Sharing as a productive
coping style. This involved them
dealing with the problem and turning to others for support. However, roughly
one in two primary parent-carers
reported using Non-productive Coping strategies at least sometimes, which is
of
concern given the strong association between this coping
style and poor mental health status.
- Family Well-being
- For the purposes of this study,
family well-being was defined as the extent
to which there is a meaningful, congruent and sustainable
family routine. Around half
of the families were Doing
Okay with regards to their family well-being.
Of the other half, just over a quarter
of the families belonged
to
the Thriving
group with the remaining just under a quarter of families falling
into the Struggling group.
- Although family well-being appeared a reasonably
stable construct (64% of families
remained in the same family well-being group at the time of the second interview,
one year later) just over
one third
of families experienced change in family well-being to the extent that
they changed family well-being groups.
Change in family well-being was associated with events or circumstances
that acted to unsettle
established family routines.
- Around 19% of families experienced a downturn
in their family well-being during
the course of the study. For these families, increased care demands associated
with
their disabled child and
increased uncertainty about the present and the future for their disabled child
and their family had made
it
difficult
to establish or sustain a meaningful and congruent everyday family
routine. On the other hand,
around 14% experienced an up-turn in their family well-being by the time
of the second interview. For these
families a positive change in their workforce participation or their
financial resources, their increasing
satisfaction with their child's school placement or overall progress, and/or
extra help coming into
the family or more time out from caregiving all contributed to their enhanced
family
well-being.
- Thriving families
presented different demographic characteristics
to Struggling families.
Thriving families were typically two parent households, with higher family incomes
and their child with a disability fully
integrated
into a mainstream school. These demographic features could
be described as an advantage
profile of family well-being.
- Families in the Struggling group exhibited
the following demographic characteristics:
sole parent households, relatively low family incomes, more than one child
with special needs, special
schooling and relatively frequent use of respite care. These demographic
features could be described as a risk
profile
of family well-being.
- Primary parent-carers in the Struggling group
fared significantly worse than
primary parent-carers in both other groups in terms of their physical and mental
health. They also perceived
more demands in terms of their child's medical/ health care needs and behaviours
than did those in the Thriving
group. Notwithstanding primary parent-carers in all three family
well-being groups had significantly poorer mental health and
vitality
by comparison with Australian
norms.
- Family well-being was subject to change depending
on circumstances and driven
by events which disrupt or destabilize everyday family routines. Single events,
a cluster of events or
a chain-like
sequence that unsettle family routines can all result in family well-being
changing for the better,
or for the worse. The three key ecocultural items that best predicted such
change were: overall satisfaction
with
subsistence base, child is viewed as an opportunity or positive development
rather than a burden
or bad
luck, and the difficulty involved in caring for the child.
- Out-of-home placement
tendency
- Most of the families (93%) at the time of first
interview had not seriously considered
placing their child out of home. A small proportion (6%) however had
already taken action to do so.
By the time of the second interview around one year later, this small group
of families
had trebled to almost
18% of
all families.
The families most likely to take action were those with fewer
adults (particularly lone mothers),
a child with intellectual disability or autism, and a child attending
special school. These families
were also more
likely to perceive much greater demands placed on the family
by their child's medical/ health care
needs and behaviours.
- Not surprisingly, family well-being was highly
correlated with placement tendency.
Those families who have greater family well-being were much less likely
to ever consider
placing their child
out of home. On the
other hand, struggling families were more likely to seriously
consider placing their child out-of-home.
Eleven out of the fourteen families who had taken action by the time
of the second interview
were in the Struggling group.
- Families for whom social integration
was an important
goal and those who viewed their child
as an opportunity
rather than a burden
were least likely to seriously consider placement. Conversely,
families were
more likely to give
serious consideration to placement
or take action if
there were fewer adults in the household,
the child with special
needs had intellectual disability or autism and attended a special
school, and they
frequently used respite
care.
- Families moving closer
to placing their
child out of
home were those who
had already gone some
way
to considering this
option and were having difficulty
sustaining their
daily routines in the face of
their child's needs
and demands
and at
the same time were
not so concerned
that their child be integrated into
the normal, everyday
world.
- Service system
barriers such as lack of appropriate and quality
placements
not only challenged families to find suitable alternative care for their
child but also set in train a process to ensure a place irrespective
of the timeliness
or readiness of the family to consider out-of-home placement as an option for
their
child.
Future Directions
A substantive change in the way that
caring at home or out-of-home care for disabled children
is conceptualised
is urgently needed. It is argued that whilst
caring at home continues to be thought about
as 'triumph
over adversity', service providers are positioned
to frame
their offerings to the family in terms of temporary
relief from the ongoing burden of care until
permanent relief becomes available or is forced
upon the
family by unforseen circumstances. Any increase
then in
requests for out-of-home placement may be an
artefact of a service
system predicated on an impairment/deficit model
and lacking sufficient resources to provide a
range of
supported family or accommodation options. Concerns
about whether families can maintain in-home care
become enmeshed in social and policy debates
about community
care (and frequently about the amount of respite
available) rather than in whether families can
sustain meaningful
routines congruent with their family goals and
wishes and the likely prospect of their being
able to so
in the future.
Further, the 'assessment' of families
of children with disabilities needs to recognize the
ongoing
project
in which families engage - that is, the construction
and maintenance of a congruent, meaningful and
sustainable family routine. This ongoing project
is central to
family life. Families unable to create this routine
or experience disruptions for the worst in their
routine, experience poor family well-being and
are much more
likely to take action to place their child out-of-home.
In contrast, those families who are able to create
and sustain a workable routine experience more
positive family well-being and are much less
likely to seek
out-of-home placement for their disabled child.
In
this light, three directions for future research are
proposed:
- Further development, a controlled trial
and independent evaluation of the Draft Family
Well-Being Interview
(Llewellyn, McConnell & Thompson, 2003)
protocol
This
study began the task of empirically demonstrating
the ways in which families differ in how well
(or otherwise) they are doing and why. From this
empirical
data a
draft protocol has been developed to assist practitioners
to understand a family's daily routine, what
is working for the family and what is not, and
the
factors that
support or impinge the family activity of establishing
and sustaining meaningful everyday routines.
There is an urgent need to further develop and
subsequently
conduct a controlled trial of the Draft Family
Well-Being Interview protocol (Llewellyn, McConnell & Thompson,
2003) with an independent evaluation of the utility
of this protocol for agencies offering family
support and services to families of children
with disabilities.
- Follow-up of families to
determine the type and level of activity focused
on out-of-home
placement
This study found a substantial increase
in the proportion of families considering out-of-home
placement by
the time of the second interview approximately
12-18 months
after the first. One stand-out finding was
the
influence of professional advice on families'
actions and specifically
wait-listing their child's name to 'secure'
a place in the future. Further research is
needed
into
this system imperative as it appears to be
driving families
to act and consider placement whether or not
they are ready for this. A follow-up study
with the
families who participated in this project is
proposed to determine
the type and level of activity focused on out-of-home
placement, paying particular attention to the
influence of professional advice on family
decision-making in
the intervening time period (2000-2003) and
prospectively to 2006 by which time the youngest
children will
have completed adolescence.
- Development of
an action research family empowerment project for
families who are struggling
building
on the strategies used by families who are
thriving.
This study differentiated families along
a continuum of sustainability, meaningfulness
and congruence
in their everyday family routines. Families
were deemed
as struggling, doing okay or thriving. Regrettably
the literature focuses more attention on
those
families who are struggling and the 'negatives'
in their lives.
Too often service providers also focus their
attention on the difficulties encountered
by families and
neglect the strategies, everyday family routines
and resources
that families who are doing well bring to
bear on their family life. An action research
family
empowerment
project utilising the experiences and stories
of families
who are doing well would provide much needed
information to assist struggling families
develop and maintain
family routines that suit all their family
members. Service agencies, practitioners,
and policy developers
would also benefit from hearing and learning
about the other, more positive experiences
in the diversity
that constitutes everyday family routines
in families with disabled children.
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Family Factors Influencing Out-of-Home Placement Decisions
(1999)
Llewellyn, G., Dunn, P., Fante, M., Turnbull, L., &
Grace, R. (1999). Family factors influencing out-of-home
placement decisions. Journal of Intellectual Disability
Research, 43 (Part 3), 219 - 233.
Background
The current Australian legislative and policy context
actively encourages families of young children with
severe disabilities to raise their child at home with
the help of specialist support services.
Caring for a disabled child places many additional
demands on parents, and this is particularly the case
when children have severe or multiple disabilities.
Research investigating the differences between those
families who have placed their child and those who have
not has identified three multidimensional variables
related to family stress which contribute to out-of-home
placement:
- Child characteristics - the older the child and
the larger the child (particularly also if the child
has physical disabilities) and the more challenging
the child's behaviour, the more likely families are
to decide they can no longer cope.
- Family characteristics - families who experience
more stresses, and heightened concerns about the health
and well-being of their non-disabled children are
more likely to seek placement.
- Support characteristics - for those families who
lack support from family members or friends, and have
little help with child-minding or respite care, the
risk of seeking out-of-home placement of their child
appears to be considerably greater.
This traditional approach of identifying the stresses
leading to out-of-home placement however gives rise
to several concerns. The first is that, by focusing
almost exclusively on the unusual demands and the difficult
nature of caring, the fact that most parents continue
to care for their disabled child is overlooked, and
attempts to understand why and how parents do this are
neglected. A related concern is that there are many
other aspects to family life than the demands of the
child with a disability. The third concern is that studies
have generally focused on older children on the assumption
that 'burden of care' increases over time, although
this is increasingly being questioned. The final concern
is methodological, in that many of the studies have
been retrospective. Parents may not remember accurately
the events leading to their decision to place their
child or engage in a process of post hoc rationalization,
particularly if placement occurred at some distant time
in the past.
Aim
The primary aim of the present study was to examine
the factors that influence families to care for their
young children with severe disabilities at home or to
seek out-of-home placement.
Specific objectives were:
- to present the everyday family life of families
with young children with severe disabilities in the
form of eight factors identified from family interview
data;
- to report how families regard out-of-home placement
and how their views relate to the factors identified
in their family life accounts;
- to present themes drawn from family explanations
about their decisions on caring for their child at
home or seeking out-of-home placement; and
- to suggest directions for future research to inform
policy and practice on out-of-home placement for young
children with disabilities and high support needs
Methodology
For the purposes of the present study, children with
high support needs were defined as those who require
continuous and extensive daily assistance, support or
supervision; whose support needs are significantly greater
than children without a disability; and who may also
have challenging behaviours such as self-injury, frequent
outbursts and aggressive behaviour.
171 families, broadly representing the demographic
distribution of Australian families, participated over
6 months in 1995. Four families however were excluded
from the final analysis because of missing data. Children
from the participating 167 families ranged in age from
15 months to 6 years (one child was 9 years old), with
the average age being 5.4 years.
Data was derived from a qualitative in-depth study
of their everyday family life, with questionnaires and
personal interviews being used. The present study drew
on the symbolic interactionist perspective and adopted
ecocultural theory and its attendant instruments to
guide collection of data.
Findings
125 (75%) families definitely did not want to place
their child (Group 1), 32 (19%) were undecided (Group
2), and 10 (6%) were actively seeking or had already
sought placement (Group 3).
Eight factors emerged as being of significance in everyday
family life:
- Family coherence - positive family affect with congruence
between the needs of the child and other family members.
- Proactive - involvement and use of special services.
- Integration and quality future - current and likely
integration of the child into the everyday world of
the family and the community.
- Finance - financial status not limiting; affordability
of desired services.
- Father's involvement - availability and participation
of the father in domestic and child care tasks.
- Mother's availability - availability and flexibility
of the mother.
- Religion - family religious involvement.
- Sibling involvement and concern - arrangement of
the family around the needs of siblings.
No significant differences between the three groups
of families were found on the following factors: proactive,
father's involvement, finance, mother's availability
and religion. Significant differences however were found
between the groups on the remaining three factors:
- Family coherence - there was a highly
significant difference between group 1 and groups
2 and 3. Families who answered 'definitely no' to
the out-of home placement question showed significantly
more satisfaction with their everyday family life
in relation to the child with high support needs than
did those families whom either had chosen or were
considering out-of-home placement for their child.
- Integration - there was a highly significant
difference between groups 2 and 3, and a highly significant
difference between groups 1 and 3. Those families
who were definitely not seeking out-of-home placement
and those families who were undecided about out-of-home
placement viewed their children much more as part
of their family life and integrated into everyday
networks in the community than did those families
who had already chosen out-of-home placement or who
were actively seeing placement for their children.
- Sibling involvement and concern - there
was a significant difference between group 3 and the
two other groups. Those families who had already placed
their children out of home or were actively seeking
placement showed significantly more concerns about
the effect of the child on the family and the involvement
of the child's siblings than those families undecided
about placement or definitely against out-of-home
placement.
Therefore, the factors which influence families in
seeking out-of-home placement are: lack of congruence
in everyday family life with regard to the child with
special needs and the needs of other family members
(family coherence); lack of integration of the child
into everyday family life and the community (integration
and quality future); and concern about the effect of
the child on the siblings now and in the future (sibling
involvement and concern).
It is also worth noting that on the integration factor,
those families who had a child with a single disability
(either intellectual or physical/sensory) viewed their
children as much more part of their family life and
integrated into everyday networks in the community than
did those families whose children had multiple disabilities.
Thematic categories also emerged from the explanations
given by families for their choice on the out-of-home
placement question. These were:
- Values and beliefs about caring for their child
- Families for whom placement was definitely not
an option (group 1) talked about:
- the child being the parents' responsibility
to be cared for at home no matter the impact
of their child's disability on family life
- Families who were undecided about placement
(group 2) spoke about:
- the care they provided at home as being
superior to the care they imagined their child
would receive if placed out of the home
- Families who had placed or were actively seeking
placement (group 3) referred to:
- their child needing better care than what
they could provide
- their concern about the effects of their
severely disabled child on their other children
- the great difficulty experienced in reaching
this decisio
- the provision of 24-hour in home care being
the only means by which this decision could
have been averted
- Change in family circumstances
Group 1
- one-third of these families who did not want
out-of-home placement for their child could not
imagine any situation that would change their
decision
- for the remaining two-thirds, out-of-home placement
would only be considered as a last resort in the
event of a dramatic change in circumstances.
Group 2
- This group most often referred to possible changes
in their child, usually physical changes, which
would make care at home no longer possible
- Other changes mentioned included the birth
of a new baby, an unanticipated family crisis,
or a change in the mother which meant that she
was no longer able to manage.
Group 3
- Comments made from this group who had already
placed their child or were actively seeking placement
represented the changes feared by families in
the other two groups. Without exception, the primary
reason for placement being made or sought was
absolute necessity for the family to survive.
- 'Messages' received about out-of-home placement
- Nearly all parents had been told that placement
should be considered by either professionals,
relatives or friends.
- Families whose children were already placed
had experienced a range of reactions from extended
family and friends from supporting their decision
to continuing to suggest that the child should
be at home.
- Professionals' expectations were unanimously
thought of as families should cope at home and
these expectations were reinforced by the lack
of available placements.
Implications
The finding that one-quarter of the families had already
sought or were considering placement for children in
this young age range is provocative. If the 32 families
currently undecided about seeking placement actually
do so, the obvious question is whether there are actually
acceptable placement options available to meet these
families' requests. Further, are there particular services
or supports that, if provided in a timely and effective
manner, could avert the need for families to make such
a decision?
For policy and practice then, there is an urgent need
for a prospective longitudinal study to explore how
families with young children with severe disabilities
create a sustainable daily family routine. Unless we
understand this, we will continue to risk promoting
interventions that conflict with, and consequently,
are not maintained in daily family life.
Second, there is an urgent need to investigate family
views on the helpfulness or otherwise of the services
that they receive which are intended to negate the need
for out-of-home placement.
Finally, the families' explanations about their out-of-home
placement decisions give pause for thought on the current
antiplacement policies and practices for children with
severe disabilities and high support needs. This is
not to suggest a return to a previous era when families
were automatically advised to place their child. Rather,
it is incumbent on researchers and policy planners alike
to further their understanding of everyday family life
with children with severe disabilities, and to creatively
develop beneficial, timely and effective supports and
services. These may include a range of situations, such
as family-based foster care, shared care or living with
a small group of children in a home-like setting.
Whilst federal and state disability legislation actively
promotes choice for people with disabilities and their
families, this choice will only be meaningful if it
implies a diversity of appropriate, acceptable and available
alternatives.
Families with Young Children with Disabilities and
High Support Needs (1996)
Llewellyn, G., Dunn, P., Fante, M., Turnbull, L., &
Grace, R. (1996). Families with Young Children with
Disabilities and High Support Needs. Sydney: Ageing
& Disability Department.
Background
In Australia, policy and practice aim to provide community
support and respite to families to enable them to care
for their young children with disabilities and high
support needs at home. Despite this, some families are
not able to, or choose not to care for their child at
home.
The number of families seeking alternative care is
not known. However, anecdotal evidence suggests that
most professionals have been asked to provide advice
about alternative living arrangements especially for
those children with high support needs.
A review of the literature on caring for a child with
a disability shows there to be multiple factors which
influence families in their decision to care for their
young child with high support needs at home or to seek
alternative care:
- Child Characteristics
- Behavioural problems of the child and their
overall level of functioning - children with more
profound disability and greater behavioural problems
are more likely to be placed in out-of-home care.
- Children in residential placement tend to be
older than those living at home.
- Accompanying medical complications or sensory
deficits, particularly deafness, are also factors
that lend to alternative care being sought.
- Family Characteristics
- Parents' physical and emotional health - caregiver
stress is the major factor related to out-of-home
placement. The health of some parents deteriorates
with the demands involved in caring for a child
with a disability. For others however, these may
stay constant or improve, with some parents for
example, reporting increased personal strength
and maturity and increased involvement in their
community.
- Parental concern about siblings also influences
placement decisions.
- Parents' personalities - optimism, extroversion
and a sense of humour have been shown to assist
parents to focus on positive aspects of their
family, adapt and accept their child's disability,
and manage daily life.
- Locus of control (i.e. belief about control
over the course of one's life) - mothers exhibiting
internal locus of control report fewer problems
and more functional social support.
- Available financial resources to purchase in
home equipment and services.
- Alleviating family problems such as marital
and/or financial difficulties provide further
reasons as to why out-of-home placements are sought.
- Family environment - high levels of characteristics
such as cohesion, integration and adaptability
influence parents' perceptions of stress and coping
with young children with severe disabilities.
- Parents that exhibit coping strategies such
as planning, direct problem-solving and information
seeking have been shown to result in parent well
being and satisfaction.
- Support Characteristics
- This relates to the availability and utilisation
of support that is informal (from family, friends
and neighbours) or formal (offered by professionals
and community agencies) and which is perceived
by parents to be helpful.
- The availability of respite care and education
and therapy programs is crucial here in terms
of parents being able to manage the demands involved
in caring for a child with a disability and high
support needs.
- The personal values of professionals - out-of-home
placement may be recommended more generally to
those parents with high occupational status and
formal education.
Literature that explores the experience of families
with a child with a disability and high support needs
is scarce. What is known however is that the priority
of these parents are practical concerns such as how
to obtain assistance, access information to help plan
for their child's future, manage the daily workload
or reorganise family life to suit the demands of all
family members. Moreover, the emerging picture shows
parenting a child with a severe disability markedly
affects the mother's life role and lifestyle. This includes
precipitating these women into ongoing and frequently
unsatisfactory relationships with professionals, who
as outsiders, come to exert a significant influence
over the family's daily life and aspirations. Professionals
are seen to be most helpful when they exhibit a genuine
interest in the family, when the needs of the whole
family are taken into consideration, when respect is
paid to the knowledge and opinions of parents, and when
they refer parents to appropriate support services.
Usually only the mother is informed about the child's
disability (often without adequate explanation about
the child's condition), with little information being
provided about what to expect of his/her development.
The little Australian research conducted over the past
decade that specifically addresses issues faced by families
from a non-English speaking background with a disabled
child raises the following concerns:
- low use of services
- lack of culturally appropriate services
- absence of NESB consumers on management committees
- lack of linguistically appropriate information
- need to educate service providers on cultural issues.
Research addressing the needs of rural families with
a disabled member identified the following issues:
- Limited availability and poor access to disability
services, counseling and training.
- Respite care was often unavailable or inappropriate
to the family's needs.
- A higher proportion of families without their disabled
child at home lived near cities or towns and thus
had access to residential care.
- Families judged the financial burden of having
a child with a disability as being moderate to heavy,
with travel being identified as the greatest cost.
- Difficulties arise because many rural people are
dispersed and isolated not only from the larger urban
centres but also from each other.
- Negative experiences with rural services being
reported, perhaps due to high staff turnover rates
and the difficulty services have in attracting trained
and skilled staff.
Overall, a review of the literature suggests there
is more to consider in the lives of families with young
children with disabilities and high support needs than
individual parent stress or child characteristics or
support available to the family. For any family, developing
and maintaining a daily routine that effectively balances
competing demands is an ever present challenge. How
much more so then, when there is a child with a disability
in the family. To understand the influences on families
with a young child with disabilities and high support
needs, we need therefore, to understand how families
view their family life and how they go about meeting
the challenge of creating a satisfactory daily routine.
Aim
The broad aim of this project was to investigate the
factors that influence families when making decisions
about caring for their young child with disabilities
with high support needs at home or in alternative care
outside the family home.
Specific objectives were:
- To investigate what factors influence families when
making decisions about caring for a child with disabilities
and high or very high support needs at home or seeking
alternative care;
- To identify service providers' perspectives with
regard to meeting the needs of these families caring
for their children at home;
- To identify how HACC and other services currently
address the needs of families with young children
with disabilities and high support needs;
- To develop principles and recommendations about
support and services relevant to these families maintaining
young children with disabilities and high support
needs at home; and,
- To develop a broad strategy for respite for these
families which will enable an approach to be followed
by each Area in implementing a program of support
for the target group. This strategy will cover a utilization
of a network of services (including HACC services)
and will recommend how HACC services (if appropriate)
can be more responsive to the needs of the target
group within this network.
Methodology
Interviews and questionnaires were conducted with 171
families with young children (0 - 6 years) with disabilities
and high support needs in metropolitan, urban and rural
areas of New South Wales. The ecocultural model was
adopted as the theoretical framework for the project.
As well as families, 58 local community services and
120 specialist service providers participated via focus
groups and interviews. Seventy-six key personnel from
organizations, agencies and peak bodies concerned with
families, disability and children were also consulted.
Federal and State government departments were represented
in interviews with 13 key personnel. Over 40 Federal
and State policy documents and reports were analysed.
Finally, policy documents, reports and materials from
innovative programs in Australia were reviewed and a
number of key personnel from other states interviewed.
Findings
(1) Parents' Perspectives
40% of the 171 families were not currently using any
respite care. Around three-quarters (74.8%) of families
definitely did not want alternative care for their children.
6% of families had already sought or were actively seeking
such care. The remaining 19.2% of families said they
may consider alternative care as a possible option in
the future. The most frequently mentioned circumstance
that would change family views on alternate care was
if something happened to the mother, followed by changes
in child-related characteristics, particularly as children
grow larger and harder to manage.
From the families' perspectives, three factors were
identified which influenced their decision to care for
their child at home or to seek alternative care. In
summary, the families most likely to seek alternative
care are those experiencing:
- A lack of congruence in their everyday family life
between the needs of the child with a disability and
the needs of other family members;
- A lack of integration of their child with a disability
into their everyday family life and the community
more generally; and
- Concerns about the effect of the child with a disability
on their siblings both now and in the future.
Service use was not shown to be a significant factor
in influencing families' decisions about caring for
their child at home or seeking alternative care.
The qualitative data demonstrated a strong sense of
responsibility from parents and a desire to provide
family care, this being viewed as far superior to any
other care. For the families who had already sought
care or were actively doing so, alternative care had
become necessary for family 'survival' - physically,
emotionally or socially. For these families the decision
to place their child had been difficult to make but
essential to maintain a satisfactory family life and
routine.
From the quantitative and qualitative family data two
key points emerged:
- That a service response is required that acknowledges
each family's individual experience of their child's
disability, their caretaking responsibilities and
their capabilities and resources to manage their everyday
family life. The overall impression about services
gained from families was of their strongly felt desire
for services to change their orientation to take into
account the needs of all family members, not just
the child with a disability. Put simply, families
want services that will help them achieve a sustainable,
satisfying family life for everyone in the family.
They want services that will help their family and
their child with a disability become accepted in the
community. Families also want services to help provide
some relief from anxiety about their child's future.
- That placement options need to be available which
support family decision-making and provide for the
child's emotional, physical and socio-cultural needs.
Issues pertaining to this raised by the study include:
- Families with children with disabilities and
high support needs needing but not having the
same access to nurturing, safe and stable alternative
care for their children as do families with children
without disabilities;
- Characteristics of the substitute care system
for children at risk - permanency planning, individual
service plans and maintaining relationships with
the family of origin - are not implemented with
children with a disability;
- The child with a disability entering the "disability"
system with a focus on their disability rather
than their needs as a child and their family needs;
- A clear lack of guidelines on entry and exit
criteria into the foster care system for children
with a disability and a lack of ongoing monitoring
of children with disability in this system; and,
- A concern that with the slightly older age
group, and possibly also with children in the
0 - 6 year old age group, that children are being
made wards of the state in order to access services
such as accommodation.
The family data in this project offer a 'point of time'
study perspective on the lives of families with young
children with disabilities and high support needs. As
such, it was not possible to investigate stages of decision-making
about placement and timing of placement decisions.
(2) Service Providers' Perspectives
The extensive consultation with community organizations
and government bodies revealed a service system that
is overly complex, poorly co-ordinated and not user
friendly. Demonstrable inequities in service delivery
across service types, geographical location and family
composition were reported. Services were described as
inaccessible or unwelcoming for many families and particularly
families from non-English speaking background, Aboriginal
and Torres Strait Islander families and rural families.
For the most part services remain disability-focused,
segregated and primarily child-oriented despite recent
attempts to offer family-focused service delivery.
Key thematic categories that emerged were:
- The Service Providers' Perspective on the Family
Experience of Disability: commonly expressed
sub-themes concerned the enormity of the impact of
disability on the parents; pressures on the parents'
relationship; the isolation experienced by mothers;
the financial impact of disability on the parents;
the frequently negative impact of professionals on
families; parents' concerns about siblings; ways that
parents manage the appropriateness (or otherwise)
of respite and the lack of alternative care options
for parents.
- The Constraints on Service Providers and Families:
the lack of political commitment to families with
a child with a disability and inequities in the service
system provided the source of service providers' frustrations
with a system which they viewed as under-resourced
and unfair to families.
- Access to Services: sub-themes focused
on the inadequate flow of information; the lack of
coordination of services; the lack of availability
and choice of services, particularly for rural families;
and, stereotyping of cultural differences and inappropriateness
of services for Aboriginal and Torres Strait Islander
families and families from a non-English speaking
background.
On the whole, service delivery in the disability field
was seen to be overly complex, fragmented, uncoordinated,
and suffering from a lack of political commitment to
meeting the needs of these families. Services were also
difficult to access due to totally inadequate information
systems and excessive specialization of services.
The consistent and strident theme throughout the project
was that this segregated, disability orientation must
be reversed. There is an urgent need to develop - and
implement - a strong family and child policy for families
with children with a disability in NSW. This is essential
for these families to be fully accepted within the community.
(3) Involvement of HACC and other Services
Lack of data on representation of families with young
children in HACC services, the services they receive
and the families' responses to these services means
that there is no way to determine need, demand and level
of satisfaction. However focus group and interview material
shed some light on these issues:
- The complexity of the service system
- There is no one agency or section within any
department which is responsible for identifying
the whole spectrum of services potentially available
for these families.
- Evidence of disconnectedness and multiple agency
involvement, leading to special, and usually segregated
services for children with disabilities.
- A general lack of knowledge for families and
service providers alike about family entitlements
and the services available.
- Families with young children with disabilities
are a hidden issue in HACC programs. HACC services
are weighted in favour of the elderly; young children
with disabilities and their carers come a poor last.
This imbalance is even more marked when families
from non-English speaking backgrounds or Aboriginal
and Torres Strait Islanders are considered.
- Expectations held about families with young children
with disabilities
- There is no clear pattern as to how families
in this target group access HACC services. This
iniquitous situation appears to result from the
ambivalent status these families have as carers.
It may be that the very young age of the children
militates against HACC providers considering such
children to be "at risk of premature or inappropriate
long term residential care".
- Systemic responses focus almost exclusively
on the families' young child as a disability 'problem'
first and as a child second. In other words, the
families are not regarded primarily as having
parent or carer needs but rather disability-specific
needs. This results in special services being
set up to cater for these children and a concurrent
lack of access to mainstream children's' services.
- Families from a non-English speaking background
are particularly disadvantaged by lack of access
to HACC services. This may be due to the cultural
stereotyping which suggests that families from
other cultures "prefer to look after their
own, within their extended family networks"
or due to the lack of information available in
accessible formats to people from non-English
speaking backgrounds.
- With regards to respite, children with disabilities
are usually excluded from services available to
other children in the community such as child
care and out-of-school hours care which provide
a 'break' for families. Second, there is insufficient
respite available evidenced by the waiting list
for Host Family respite, the primary form of respite
care for children in the 0-6 age range.
Overall, families were seen to become entrenched on
a 'disability pathway' as so few ordinary experiences
and services are available to them. Moreover, these
families suffer from their ambivalent status as carers
to the extent that they are not well served by the very
programs aiming to provide support to carers.
(4) & (5) Support & Service Principles
/ Strategies for Respite
Key Issues/Considerations:
- Families with young children with disabilities
with high support needs are as diverse as other families
with young children in the community, yet the one
thing they have in common is their extraordinary caring
responsibilities.
- The current response by the service system to these
families was found to be primarily specialist and
segregated, fragmented and inconsistent.
- In the absence of fundamental epidemiological information
based on a clear definition of disability and high
support needs, it is not possible to gauge the extent
of need for support and services or to predict level
of demand or level of unmet need for this group of
families.
- There is a need to support these families from
a family-responsive framework, that is, a framework
focused on understanding family views, values and
needs from the family's perspective. It does not fit
within the traditional view of supplying services
to assist the development of a child with a disability.
Thus it involves re-orienting specialist services,
and educating and supporting mainstream services,
to support families to develop congruence between
the needs of the child with a disability and the needs
of other family members, to achieve integration of
their child into everyday family life and the community
and to reduce family anxiety about the effect of the
child with a disability on their siblings.
Recommendations
Recommendation 1.1
That the Ageing and Disability Department take the
lead role in developing the specialist disability
service system to feature the full spectrum of permanency
planning options available for families with young
children without disabilities.
Objective: To ensure that across NSW, departments
and agencies responsible for children with disabilities
incorporate good practice models in relation to alternative
care and permanent placement and planning for young
children with disabilities and high support needs.
Immediate Action:
- The Ageing and Disability Department, as a matter
of urgency, initiate policy and planning discussions
between those departments and agencies in NSW responsible
for families with young children with disabilities
and those responsible for substitute care for families
with young children without disabilities.
- Particular attention is to be paid to policy formulation
and implementation of the full spectrum of permanency
planning options for children with disabilities incorporating
good practice models from the substitute care sector.
Recommendation 1.2
That the Ageing and Disability Department take the
lead role in providing funding to support ongoing
investigation of the factors which, over time, influence
families to seek alternative care to inform policy,
practice and allocation of resources.
Objective: To utilize the existing data base of families
to investigate family decision-making over time about
seeking alternative care to provide a basis for policy
formulation and resources allocation.
Immediate Action:
- The Ageing and Disability Department procure funding
to support a prospective, longitudinal study to investigate
the factors influencing timing of placement decisions
by families of young children with disabilities and
high support needs.
- The longitudinal study will utilize the existing
data base of families with particular attention being
paid to those families currently undecided about alternative
care for their child.
Recommendation 2.1
That the Ageing and Disability Department take a
lead role in developing a strong and coordinated family
and child policy and ensuring this is implemented
across all departments, agencies and funded organizations
in NSW providing benefits and services to families
with young children with disabilities and high support
needs.
Objective: To reduce the complexity and specialization
of the service system by ensuring a coordinated and
collaborative approach to policy development for families
with children with disabilities and high support needs.
Immediate Action:
- The Ageing and Disability Department initiate policy
development in consultation with representatives from
all departments, agencies and funded organizations
providing services and benefits to families with children
with disabilities and high support needs
- The departments to be represented include, but
are not limited to, the Ageing and Disability Department,
the Department of Community Services, the Department
of Health, the Department of School Education, the
Department of Housing and the Department of Transport.
- Particular attention is to be paid to including
representatives from departments, agencies and funded
organizations responsible for providing mainstream
children's services
Recommendation 2.2
That the Ageing and Disability Department take a
lead role in initiating and funding a centralized,
computerized information service on a 1800 number
so that information is available to families and service
providers in a non-discriminatory manner.
Objective: To ensure that information is readily
available and easily accessible in a central place
to families with children with disabilities and high
support needs and service providers.
Immediate Action:
- The Ageing and Disability Department initiate a
committee with representatives from departments, agencies
and non-government organizations.
- The role of this committee will be to review current
information services and to advise on the best manner
in which information can be made available in a non-discriminatory
manner to families of children with disabilities and
service providers.
- Particular attention is to be paid to the information
needs of rural families, Aboriginal and Torres Strait
Islander families and Non-English speaking families.
Recommendation 3.1
That the Ageing and Disability Department initiate
a review of the current level of service provision
by HACC services to families with children with disabilities
and high support needs in order to establish baseline
data to permit policy development, planning and future
outcome evaluations.
Objective: To gather the necessary empirical data
on level and quality of service provision for families
with young children with disabilities across HACC
funded services in NSW.
Immediate Action:
- The Ageing and Disability Department, as a matter
of urgency, require that the planned review of the
Home care Service of NSW include the following components
to audit the level and quality of service provision
to families with young children with disabilities
with high support needs.
- A description of the characteristics of families
of young children served by the specific HACC funded
service and their needs for support, including an
account of the way these families access the service.
- A description of the service packages that these
families receive and the way in which their service
needs are determined and service provision and delivery
decided.
- A description of the costs of service to these
families in the Specific HACC funded service and of
the factors influencing variations in costs.
- An examination of the factors that aid and impede
the achievement of the specific HACC funded service
in relation to these clients.
- A description of family reactions to the specific
HACC funded service.
- Following the implementation of the Home Care review,
attention to be paid to conducting similar audits
of other HACC funded services in NSW applicable to
families with young children with disabilities and
high support needs.
Recommendation 3.2
That the Ageing and Disability Department ensure
that respite care services for families with young
children with disabilities and high support needs
are directed to supporting the family care situation
and are consistent with the usual community expectations
of care for preschool age children.
Objective: To ensure that respite opportunities are
acceptable to families with young children with disabilities
and high support needs and in line with community
expectations of care for young children.
Immediate Action:
- The Ageing and Disability Department, as a matter
of urgency, initiate a committee with representatives
across departments, agencies and non-government organizations
to advise on policy and planning for a broad range
of respite services.
- As a matter of urgency, the committee develop principles
for respite based on supporting the family situation
rather than, as at present, providing 'relief'.
- The committee address a range of options for providing
respite care to families of young children with disabilities
and high support needs including but not limited to:
financial support to extended family and friends to
provide respite; provision of in-home respite for
the child and siblings; and, providing financial support
to parents to purchase respite which meets their individual
family needs.
Recommendation 4.1
That the Ageing and Disability Department initiate
a high level, across-departments and agencies committee
and initiate and fund each Area of the Department
of Community Services to develop a similar committee
at Area level in collaboration with funded organizations.
Objective: To ensure that across NSW all families
with young children with disabilities and high support
needs are identified and there is a central and local
Area response to incorporating a family-responsive
framework within services for these families.
Immediate Action:
- The Ageing and Disability Department initiate a
high level, across departments and agencies committee
to examine the implementation of a family responsive
framework in services for families with young children
with disabilities and high support needs.
- The Ageing and Disability Department initiate and
fund each Area to establish a committee for families
with children with disabilities with high support
needs consisting of representatives of departments,
agencies and funded organizations. It may be possible
to link this committee to existing Area Disability
Committees or to expand the role of the existing Area
Disability Committees to incorporate the proposed
committee tasks.
- Each Area committee is to identify families with
children with disabilities and high support needs
and to consider ways in which services in the Area
can incorporate a family responsive framework.
- Each committee will address the following four
areas of substantial need identified in this project:
- The identification of children with disabilities
and high support needs in the hospital system
whether this be after birth, for respite, or for
treatment which could potentially be carried out
in the community with appropriate supports. Particular
attention needs to be given to families from a
non-English speaking background and Aboriginal
and Torres Strait Islander families in the hospital
system.
- The identification of children with disabilities
and high support needs who currently are not linked
into any community services. These families could
potentially be accessed via hospital emergency
departments and general practitioners. Again,
particular attention needs to be given to families
from a non-English speaking background and Aboriginal
and Torres Strait Islander families attending
these services.
- The identification of families from a non-English
speaking background with children disabilities
and high support needs. Although some of these
families will be identified through the hospital
system and general practitioners the particular
reasons why such families are not accessing specialist
and community services need to be addressed. This
aspect of the committee's work needs to be implemented
by an agency specializing in work with people
from a non-English speaking background to ensure
as thorough as possible and culturally appropriate
processes are implemented in locating and contacting
families.
- The identification of Aboriginal and Torres
Strait Islander families with children with disabilities
and high support needs. Again, although some of
these families will be identified through the
hospital system and general practitioners, the
particular reasons why such families are not accessing
specialist and community services need to be addressed.
This aspect of the committee's role needs to be
implemented by an agency specializing in work
with Aboriginal and Torres Strait Islander people
to ensure as thorough as possible and culturally
appropriate processes are implemented in locating
and contacting families.
Recommendation 4.2
That the Ageing and Disability Department initiate
and fund each Area of the Department of Community
Services in collaboration with funded organizations
to identify those families with young children with
disabilities and high support needs currently under
extreme stress where there is a risk that the child
will need to be placed in alternative care, and provide
a case management and discretionary funding model
to support these families.
Objective: To ensure that families in NSW with young
children with disabilities and high support needs
at risk of placing their child in care are identified
and supported using a case management and discretionary
funding model to ensure individual family needs are
identified.
Immediate Action:
- The Ageing and Disability Department undertake
to review the evaluation of the Victorian Making a
Difference project with the view to establishing a
similar project in NSW.
- Attention to be paid to incorporating the principles
of effective case management as identified by Reynolds
(1992) in the suggested case management and discretionary
funding model as follows:
- the service is directed at a small and vulnerable
client group.
- the case manage works with the client, their
carers and service providers to ensure a coordinated
response to the client's needs.
- there is ongoing accountability on the part
of the case manager based on a strong ideological
commitment to an individualized client focus.
- the case manage has access to financial resources
to purchase significant levels of additional services.
- the case manager bears responsibility for addressing
inter-agency issues.
- inter-agency structures exist that fulfil a
policy or advisory role to support ongoing case
management.
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