Out-of-home placement

What we know:

- 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

- The primary desire of families with children with disabilities is to care for their children at home

- Despite this desire, families seek or consider placement for their children when there is:
* a lack of congruence in everyday family life between meeting the needs of the disabled child and those of other family members;

* a lack of integration of the disabled child into everyday family life and the wider community; and/or

* when parents hold concerns about the effect of the disabled child on their siblings both now and in the future

- 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

- Looking at family well-being or family quality of life rather than family stress provides a useful avenue for understanding out-of-home placement decisions. Family well-being is good when there is a meaningful, congruent and sustainable routine. It can deteriorate when there are events or circumstances that act to unsettle established family routines

- Family well-being is highly correlated with placement tendency. Those families who have greater family well-being are much less likely to ever consider placing their child out of home. On the other hand, struggling families are more likely to seriously consider placing their child out-of-home

- Thriving families are typically two parent households, with higher family incomes and their child with a disability fully integrated into a mainstream school. These demographic features can be described as an advantage profile of family well-being. In contrast, families who are struggling exhibit 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. Parents in this group also suffer poorer physical and mental health

- Families most likely to consider and place their child out of home were those with fewer adults (particularly lone mothers), a child with intellectual disability or autism, and a child attending special school. These families are also more likely to perceive much greater demands placed on the family by their child's medical/ health care needs and behaviours

- Service system barriers such as lack of appropriate and quality respite placements not only challenge 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

What we can do:

  • Acknowledge each family's individual experience of their child's disability, their caretaking responsibilities and their capabilities and resources to manage their everyday family life
  • Ensure that assessments and intervention plans consider the ability of parents to construct and maintain congruent, meaningful and sustainable routines
  • Take a genuine interest in the whole family, not just the child with a disability
  • Consider the needs of all family members and pay respect to the knowledge and opinions of parents
  • Offer placement options that support family decision-making and provide for the child's emotional, physical and socio-cultural needs
  • Further our understanding of everyday family life with children with severe disabilities, and 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

Want to know more? Check out these publications:

Llewellyn, G., Thompson, K., Whybrow, S., McConnell, D., Bratel, J., Coles, D., & Wearing, C. (March 2003). Supporting Families: Family Well-being and Children with Disabilities. University of Sydney. An ARC SPIRT collaborative research project conducted by the University of Sydney in collaboration with the Spastic Centre of NSW.

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.

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.