COMPLETED RESEARCH

Out-of-home placement

Supporting Families: Family Well-being & Children with Disabilities (2003)

Family Factors Influencing Out-of-Home Placement Decisions (1999)

Families with Young Children with Disabilities and High Support Needs (1996)


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:

1. 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
2. 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
3. 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.

Method

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

1. 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

2. 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.

3. 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.

4. 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:

  1. 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.
  2. 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.
  3. 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.

Related Publications

Llewelyn, G., McConnell, D., Thompson, K. & Whybrow, S. (2005) Out-of-home Placement of School-age Children with Disabilities and High Support Needs. Journal of Applied Research in Intellectual Disabilities, 18, 1-6.


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:

1. 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.
2. 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.
3. 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:

1. 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;
2. to report how families regard out-of-home placement and how their views relate to the factors identified in their family life accounts;
3. to present themes drawn from family explanations about their decisions on caring for their child at home or seeking out-of-home placement; and
4. 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

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:

1. Family coherence - positive family affect with congruence between the needs of the child and other family members.
2. Proactive - involvement and use of special services.
3. Integration and quality future - current and likely integration of the child into the everyday world of the family and the community.
4. Finance - financial status not limiting; affordability of desired services.
5. Father's involvement - availability and participation of the father in domestic and child care tasks.
6. Mother's availability - availability and flexibility of the mother.
7. Religion - family religious involvement.
8. 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:

1. Values and beliefs about caring for their child
* Families for whom placement was definitely not an option (group 1) talked about:
o 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:
o 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:
o their child needing better care than what they could provide
o their concern about the effects of their severely disabled child on their other children
o the great difficulty experienced in reaching this decisio
o the provision of 24-hour in home care being the only means by which this decision could have been averted


2. 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.


3. '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:

1. low use of services
2. lack of culturally appropriate services
3. absence of NESB consumers on management committees
4. lack of linguistically appropriate information
5. need to educate service providers on cultural issues.

Research addressing the needs of rural families with a disabled member identified the following issues:

1. Limited availability and poor access to disability services, counseling and training.
2. Respite care was often unavailable or inappropriate to the family's needs.
3. A higher proportion of families without their disabled child at home lived near cities or towns and thus had access to residential care.
4. 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.
5. Difficulties arise because many rural people are dispersed and isolated not only from the larger urban centres but also from each other.
6. 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:

  1. 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;
  2. To identify service providers' perspectives with regard to meeting the needs of these families caring for their children at home;
  3. To identify how HACC and other services currently address the needs of families with young children with disabilities and high support needs;
  4. 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,
  5. 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.

Method

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:

1. 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;

2. A lack of integration of their child with a disability into their everyday family life and the community more generally; and

3. 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:

1. 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.

2. 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:

1. 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.
2. 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.
3. 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:

1. 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.
2. 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:
    1. 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.
    2. 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.
    3. 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.
    4. 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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