Children and young people with disabilities
in voluntary out-of-home care (VOOHC):
Factors contributing to placement
Angel...
The Supporting Families Study
• Commissioned by the SA Department for Community &
Social Inclusion (DCSI) Disability Servi...
VOOHC
• Placement initiated by parents (i.e. voluntarily) without a
court order i.e. parents retain legal guardianship
• P...
Research aim
• To explore the circumstances of children and young
people with disability under 18 years in VOOHC
in South ...
Research Questions
• What are the factors contributing to placement
in VOOHC?
• What are the experiences and consequences ...
Methods
• Review of existing data for children and young people on
the Disability Services OOHC Register (n=31)
• Semi-str...
Background
• Expectation that children with disabilities are cared for in
the family home
• Parents caring for children wi...
Previous research
• Prospective
(Llewellyn et al., 1999)
• Focus on adults
(Nankervis et at., 2011)
• Inclusive of all chi...
Limitations of the present study
• Results must be considered in context (time and place)
• Numbers of children in VOOHC a...
“Snapshot” of children and young
people with disabilities in VOOHC
in SA
Characteristics of the child/young person
• 61% male
• 68% 15+ years
o Age at placement: 84% 12-17 years
• 55% had a diagn...
Reasons for placement
(VOOHC Placement Agreement)
1. Unable to cope with or manage challenging
behaviour
2. Physical viole...
Placement experience:
• All but one family interviewed spoke of the decision to
place their child in OOHC as being “a last...
• Most parents felt challenging behaviours escalated as
the child got older, around the onset of puberty
o Physically more...
• 6/10 families interviewed reported their child was
“suspended for everything” or constantly suspended
and excluded”.
• P...
Siblings
Sibling welfare often a “trigger factor”:
• Physical risk
• Parents felt they couldn’t meet the needs of siblings...
Parent/ carer health
• One or both carers in 8/10 families interviewed reported
a serious mental or physical health condit...
Other family factors
• Over half of families of children in VOOHC at the time
of the study had one or more environmental s...
Services
• In some cases, the decision to place a child in VOOHC
“came out of the blue”.
o Moving interstate
• Many parent...
Services
• While most families were receiving services prior to
placement, many parents interviewed felt these were
offere...
Lack of formal planned respite arrangements a significant
factor in the build-up of stress prior to placement
• Family rea...
The National Disability Insurance Scheme (NDIS)
• One of the core aims of the NDIS is to better support
families and carer...
Thank you
Angela.crettenden@novita.org.au
Research outputs
• Crettenden, A., Wright, A., & Beilby, E. (2014).
Supporting Families: Outcomes of placement in
voluntar...
References
• Bourke-Taylor, H., Howie, L., Law, M., & Pallant, J. F. (2012). Self-reported mental health of mothers
with a...
• Sawyer, M., Bittman, M., La Greca, A., Crettenden, A., Harchak, T., & Martin, J. (2010). Time
demands of caring for chil...
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Dr Angela Crettenden - Novita Children's Services - Children and young people with disabilities in voluntary out-of-home care (VOHC): Understanding factors contributing to placement

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Angela Crettenden delivered the presentation at the 2014 Out of Home Care Summit.

The 2014 Out of Home Care Summit featured highly interactive sessions and a series of four half-day targeted streams covering the current, topical issues in Out of Home Care across Australia. Showcasing innovative solutions and viable strategies, the Summit focused on the highly practical nature of affecting change within the sector.

For more information about the event, please visit: http://www.informa.com.au/outofhome14

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Dr Angela Crettenden - Novita Children's Services - Children and young people with disabilities in voluntary out-of-home care (VOHC): Understanding factors contributing to placement

  1. 1. Children and young people with disabilities in voluntary out-of-home care (VOOHC): Factors contributing to placement Angela Crettenden
  2. 2. The Supporting Families Study • Commissioned by the SA Department for Community & Social Inclusion (DCSI) Disability Services • Conducted by Novita Children's Services Research & Innovation department between October 2012 and March 2013 • Novita Research Team: o Dr Angela Crettenden; Dr Annemarie Wright; & Erin Beilby o Reference Group including senior DCSI and DECD staff
  3. 3. VOOHC • Placement initiated by parents (i.e. voluntarily) without a court order i.e. parents retain legal guardianship • Placements organised by Disability Services • South Australian (Disability Services) context: o VOOHC - Child or young person has been living away from the family home at least 2 days a week for a minimum of 3 months o Shared care - Children or young people who live in the family home at least 2 days in a week are considered to be in a shared care arrangement
  4. 4. Research aim • To explore the circumstances of children and young people with disability under 18 years in VOOHC in South Australia.
  5. 5. Research Questions • What are the factors contributing to placement in VOOHC? • What are the experiences and consequences of placement for children and families? • What are families’ views on services and supports?
  6. 6. Methods • Review of existing data for children and young people on the Disability Services OOHC Register (n=31) • Semi-structured interviews: o 14 parents/carers from 10 families o 4 young people in VOOHC o 6 accommodation services managers (NGOs) o 2 Disability Services staff • 3 focus groups with Disability Services staff
  7. 7. Background • Expectation that children with disabilities are cared for in the family home • Parents caring for children with disabilities have extensive additional demands on their time & resources (Crettenden, 2008; Sawyer et al., 2010; 2011) ..and are at high risk of psychological problems (depression & anxiety) and marital stress (eg., Bourke-Taylor et al., 2012; Risdal & Singer, 2004; Singer, 2006) • Children with disability show higher rates of emotional and behavioural problems than their peers (eg .,Dekker etal., 2002; Emerson & Einfeld, 2010; Stromme & Diseth, 2000)
  8. 8. Previous research • Prospective (Llewellyn et al., 1999) • Focus on adults (Nankervis et at., 2011) • Inclusive of all children with disabilities in OOHC (Victorian Equal Opportunities &Human Rights Commission, 2012)
  9. 9. Limitations of the present study • Results must be considered in context (time and place) • Numbers of children in VOOHC are small • Views are not necessarily representative But • This group is important – at the “extreme of the spectrum” but issues raised are useful in understanding the stresses experienced by all parents of children and young people with disabilities and that may have to the potential to lead to placement in VOOHC
  10. 10. “Snapshot” of children and young people with disabilities in VOOHC in SA
  11. 11. Characteristics of the child/young person • 61% male • 68% 15+ years o Age at placement: 84% 12-17 years • 55% had a diagnosis of ASD (32% ID & ASD) • 71% had one or more conditions (e.g., ADHD, epilepsy, asthma) • 97% exhibited challenging and difficult behaviours prior to placement (violence/aggression) • 50% had one or more school suspensions
  12. 12. Reasons for placement (VOOHC Placement Agreement) 1. Unable to cope with or manage challenging behaviour 2. Physical violence towards siblings 3. Parent (grandparent) ill heath/ mental capacity/ age
  13. 13. Placement experience: • All but one family interviewed spoke of the decision to place their child in OOHC as being “a last resort”, after they had “tried everything” and “done everything” but “there was no relief” and “they didn’t know what else to do”. “It was the worst week of my life that culminated (in my child being placed in OOHC) after years and years of working harder than most people could imagine.” (Parent/carer interview) • For many parents/carers who were interviewed managing difficult behaviour was an “unrelenting” task.
  14. 14. • Most parents felt challenging behaviours escalated as the child got older, around the onset of puberty o Physically more demanding o Previously successful behavioural strategies not appropriate or ineffective • Trends in data: o Younger age at placement = self-injurious / self- stimulatory behaviours / property damage o Older age at placement = verbal or physical aggression Challenging behaviour
  15. 15. • 6/10 families interviewed reported their child was “suspended for everything” or constantly suspended and excluded”. • Parents felt schools lacked resources/ skills to provide appropriate support for their child “Suspensions meant that the child is home all the time and this can be the last straw for some families already living in a fragile system. They rely on that time from 9am to 3.30pm for respite” (Disability Services staff focus group) School support
  16. 16. Siblings Sibling welfare often a “trigger factor”: • Physical risk • Parents felt they couldn’t meet the needs of siblings o Siblings were often isolated for safety or by choice; “had no privacy”; were withdrawn; “struggled a lot”, and missed out on regular activities like having friends over
  17. 17. Parent/ carer health • One or both carers in 8/10 families interviewed reported a serious mental or physical health condition (depression, heart problems, back pain) o In some cases the primary carer was caring for other family members • Parents reported feeling “burnout” and “exhausted” o The toll of advocacy (diagnosis, therapy and other services, school supports)
  18. 18. Other family factors • Over half of families of children in VOOHC at the time of the study had one or more environmental stressors (eg., family conflict, housing transitions/difficulties, parental separation, substance abuse) • Many were socially isolated or lacking social supports o Relationship stress and marital breakdown o Extended family unable to cope with the child’s disability/ behaviour • Additional financial pressures o Balancing care and work • Parent capacity or resources
  19. 19. Services • In some cases, the decision to place a child in VOOHC “came out of the blue”. o Moving interstate • Many parents interviewed felt the decision to place their child in VOOHC would have happened regardless of the level of service provision.
  20. 20. Services • While most families were receiving services prior to placement, many parents interviewed felt these were offered late and were crisis driven. o Relationship with service coordinator (key worker) o Intensive Family Support Services o Attitudes / experience / continuity of staff o Age related service models  Response driven models rely on parents knowing what’s available and being able to ask for help
  21. 21. Lack of formal planned respite arrangements a significant factor in the build-up of stress prior to placement • Family readiness.. • Availability & inflexibility of respite options (centre based, overnight) • Unreliability of arrangements • Equity? Importance of respite
  22. 22. The National Disability Insurance Scheme (NDIS) • One of the core aims of the NDIS is to better support families and carers in their roles, however... o The National Disability Insurance Agency (NDIA) does not fund individual supports specifically for carers. • The NDIA can fund “reasonable and necessary supports” for participants that will also support families and carers in their roles (personal care, carer training). • Watch this space!
  23. 23. Thank you Angela.crettenden@novita.org.au
  24. 24. Research outputs • Crettenden, A., Wright, A., & Beilby, E. (2014). Supporting Families: Outcomes of placement in voluntary out-of-home care for children and young people with developmental disabilities. Children and Youth Services Review, 39, 57-64. • Available soon: DCSI Research Bulletin: Supporting Families: Children and young people with disability living in voluntary out- of-home care in South Australia
  25. 25. References • Bourke-Taylor, H., Howie, L., Law, M., & Pallant, J. F. (2012). Self-reported mental health of mothers with a school-aged child with a disability in Victoria: A mixed method study. [Article]. Journal of Paediatrics & Child Health, 48(2), 153-159. • Crettenden (2008) Time to Care: Relationship between time spent caring for pre-school children with developmental delays and psychological, social and physical well-being of parents. PhD thesis. • Dekker, M. C., Koot, H. M., van der Ende, J., & Verhulst, F. C. (2002). Emotional and behavioral problems in children and adolescents with and without intellectual disability. Journal of Child Psychology and Psychiatry, 43(8), 1087-1098. • 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(3), 219-233. • Nankervis, K., Rosewarne, A., & Vassos, M. (2011a). Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care. Journal of Intellectual Disability Research, 55(4), 422-433. • Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29(2), 95-103. • Sawyer, M., Bittman, M., LaGreca, A., Crettenden, A., Borojevic, N., Raghavendra, P., & Russo, R. (2011) Time demands of caring for children with cerebral palsy: What are the implications for maternal mental health, Developmental Medicine and Child Neurology, 53(4), 338-343.
  26. 26. • Sawyer, M., Bittman, M., La Greca, A., Crettenden, A., Harchak, T., & Martin, J. (2010). Time demands of caring for children with autism. What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40(5), 620-628. • Singer, G. H. S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111(3), 155- 169. • Emerson, E., & Einfeld, S. (2010). Emotional and behavioural difficulties in young children with and without developmental delay: a bi-national perspective. [Article]. Journal of Child Psychology & Psychiatry, 51(5), 583-593. • Strømme, P., & Diseth, T. H. (2000). Prevalence of psychiatric diagnoses in children with mental retardation: Data from a population-based study. Developmental Medicine & Child Neurology, 42(4), 266-270. • Victorian Equal Opportunity & Human Rights Commission. (2012). Desperate Measures: The relinquishment of children with disability into state care in Victoria.

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