The out of home care system is meant to help children. Instead, they often come out worse off.
A room is filled with groups of children dancing, painting and beating bongo drums. It’s a creative arts charity event run for children from troubled families. Fifteen-year-old Taylar* has been shy all morning but is now engaging freely. In the afternoon she performs with a beaming smile in a showcase the children put on for their families. Three months later Taylar tragically witnesses her mother being stabbed to death.
“Horrific experiences”, emotional abuse or neglect are generally the precursor for children entering foster care or kinship care, according to Dr Joseph McDowell, head of research at Create Foundation. Create is a charity representing the voices of children and young people in Out Of Home Care (OOHC) which includes children in foster care placements, kinship care with relatives and residential care homes where groups of young people share a house with social workers.
For GPs, this demographic requires a special dexterity of care. Children in OOHC have more health needs [1] than same-aged peers. Physical and psychological abuse, severe neglect and sexual assault not only triggers a child’s removal from their family but also significantly compromises their wellbeing. With an overlay of other possible health issues – foetal alcohol spectrum disorder and the full spectrum of normal childhood illnesses and disabilities – health needs rank high for the 46,000 children and young people who live in OOHC in Australia.
It makes sense that each child and young person in OOHC should have an individualised health plan. However, Dr McDowell says the National Standards for Out-Of-Home-Care requiring a medical plan was never fully implemented.
“It just dropped off the radar and so for many children, it is overlooked in the admission process,” he told The Medical Republic.
The National Clinical Assessment Framework sets the bar appropriately high; within 30 days of a new care placement, each child should have an initial health assessment a GP. A comprehensive assessment should be completed within three months.
Dr McDowell emphasizes the critical value of a comprehensive assessment within three months.
“It basically sets the framework for this young person’s future. That can feed into NDIS plans and a whole range of developmental goals for schooling and so on. But it’s a very difficult thing to actually track unless you’ve got linkage of health records,” Dr McDowell says.
Paediatrician Karen McLean took on the challenge of data linkage at the Murdoch Children’s Research Institute and linked Medicare data of children entering OOHC with public data sets [2] for GPs, paediatricians and a range of other specialisations.
“The findings are quite disturbing. Less than 1% of all children placed in care visited all the recommended services in 12 months. Not even half of them saw a GP within the first 30 days of starting OOHC,” Dr McLean says. This is despite the extreme physical abuse, neglect, and/or sexual traumas that have led to the child being placed in care.
Children often arrive in a care placement with no record of health history. Dr McLean says it places doctors and carers in a tricky spot.
“As clinicians, we want to know what happened to the child. Were they born early? Have they been immunized? And it’s really difficult when the foster carer says “I don’t know. They just dropped this child at my doorstep and I have no information”,” Dr McLean says.
Accessing Medicare numbers for the children is a common barrier. Although there are systems in place Dr McLean says they don’t work very well with over 50% of carers waiting more than three months for medical consent.
Children placed with a family member in kinship care are even more unlikely to meet guidelines. Many kinship carers are grandparents. Dr McLean says they may have reduced mobility, be on a pension or have low digital literacy. This makes it more difficult to navigate health appointments, government departments and out-of-pocket cost.
COMMON HEALTH ISSUES
Doctors are likely to find health problems in one or more of these developmental domains: physical health, socio-emotional wellbeing and cognitive/learning ability. This frequently manifests as higher levels of psychological and behaviour problems like aggression and hyperactivity and slowed language development from infanthood. Dr McLean says to expect asthma and eczema and other routine child physical health conditions.
“However, for children in OOHC, the common conditions might be more frequent, because we know that there’s a real socio-economic gradient with health,” she says.
Dr McLean says that intellectual disability is common with foetal alcohol spectrum disorder and may be visible through particular facial features and a small head size. Executive functioning like planning and paying attention as well as mental health concerns are likely.
“The impacts of a stressful environment and raised cortisol levels in a baby in utero, or the first few years of life, actually changes the shape of a child’s brain and their brain development. A lot of it can look like ADHD or autism spectrum disorder, so it can be challenging to tease out what’s what,” Dr McLean says.
Constipation and toileting issues are very common as are stomach pain which could actually be anxiety and distress manifesting physically, Dr McLean says. Hearing and vision problems are also likely, as are dental problems.
“Some of the children’s mouths I’ve seen – it doesn’t take dental training to see holes in teeth like that. People are often unaware of the community dental health service. It often has a long wait list but is free,” she says.
COMPOUNDING TRAUMA OF BEING IN OOHC
Poor health outcomes for children in OOHC is often blamed on the horrific experiences which instigated their placement in care. However, research abundantly confirms that institutionalisation itself further contributes to increased risks for adverse outcomes [3]. Numerous studies confirm the compounding trauma of OOHC placement [4], the adverse effects of institutionalisation and the poor level of health care accessed [5].
It’s also errant to believe that once a child in placed OOHC they are safe from deliberate maltreatment. Nearly 1500 reports of neglect and physical or sexual abuse of children in OOHC were substantiated in 2020-2021. This first report on the safety of Australian children in care identified perpetrators as approved carers, people in the same home or community, and agency staff.
Complex and chronic health conditions often remain untreated for children and young people in OOHC, according to a Monash Centre for Health Research study in 2020 [6]. The research, led by Madelaine Smales, captures the first-hand experiences of young people during their time in OOHC. Misdiagnosis, lack of care and support and reporting failures led to most young people in OOHC feeling let down by the system.
“[Vaccinations] were never properly recorded, whether I had shots or not. So, every year, at high school, when we had shots being done, I got chicken pox [vaccination] every year. Even though I said I had had it the previous year. But there was no actual record of it happening.” [Young Person 07]
The Monash research said that numerous young people reported that they were misdiagnosed.
“My anxiety was pretty bad, so I actually did get stomach pains, and then the doctor just said, oh you need some Nexium. And I’m like, “Okay”, when really I was just getting bullied at school.” [Young Person 02]
Teenage girls face increased risks of adverse sexual and reproductive health outcomes [8] and all young people in OOHC are substantially more likely to have post traumatic stress disorder (PTSD). Risks are amplified if a young person is placed in residential care, which is called “a place of last resort” in an RACGP study [8]. Recent research shows that that residential care is as tough as homelessness for young people [9] and creates an even higher risk of self-harm.
If a young person is lucky enough to have a health plan, follow-up and routine checks were uncommon or non-existent, according to young people in the Monash study.
“I was attacked at school and I had my nose knocked out of place…and I got taken to the doctors. They had a look at it. Like slightly checked and said, “oh, it should be okay. But you should follow up, get x-rays”. X-rays were never done. [I’ve also had] issues with back pain. A paediatrician said I may have scoliosis, and that needs to be followed up on with my next appointment with them. And then that never happened. [Then I] dislocated my knee. A month or so later, had an ultrasound on it, which never got taken back to the doctors to hear the results of that. [Young Person 07]
Adulthood rarely improves health outcomes. Even after adjustments for pre-OOHC behaviour problems, trauma and family background, adverse health outcomes are likely. It’s a list of every parents nightmare; substance abuse, teenage parenthood, lower educational achievements, poor job prospects, addictions and incarceration.
DOCTORS PLAY A CRITICAL ROLE
Although OOHC alumni are up against the odds research indicates that improved healthcare must be leveraged to break the disadvantage. Many Public Health Networks across Australia offer health pathways for GPs working with children in OOHC.
Paediatrician Karen McLean suggests GPs to book long appointments for children that they think may be in OOHC. Dr McLean also encourages patience when helping carers navigate health history gaps and treatment options. She entreats doctors who have a heart for this population to contact an OOHC agency in their catchment.
“It will mean that those children get to see somebody who actually does want to see them,” Dr McLean says.
Treating trauma
Dr McLean also encourages that doctors treating children in OOHC should be familiar with the impact of childhood trauma. As Aboriginal and Torres Strait Islander children are over represented in OOHC it is also essential that treatment is collaborative and respectful of Indigenous-informed cultural priorities and practices
“You might need to upskill and learn over time but it provides consistency for the child which is important in a trauma informed approach,” Dr McLean says.
Associate Professor Rachel Hiller, from the University College London, specialises in complex PTSD [11]. She concurs that continuity of professional care is essential for children who have experienced trauma and especially where there may not be consistent caregivers or adults in their life.
“Many young people in OOHC have been let down by adults, including professionals, so building trust and continuity is crucial,” she says.
Professor Hiller says that the best way to know if a young person is struggling with their mental health is to ask them. She cautions that the complexity of the mental health difficulties should not be a reason for not assessing and addressing it.
“There are many assumptions about the mental health of young people in OOHC, including that they don’t fit our current diagnostic frameworks or that the problem must be attachment. These assumptions are often unsupported by research. It’s important that all of us, including health care professionals, acknowledge and reflect on our assumptions, and whether these might help or hinder care,” she says.
Professor Hiller says that screening for PTSD can open up conversations about young person’s mental health and can support more targeted referrals.
“We already have good screening tools for children’s mental health, which can be used with young people in OOHC as part of a comprehensive assessment of their mental health needs. The most useful tool we have to screen for PTSD is the child revised impact of events scale – it’s referred to as the CRIES-8. This is a validated, 8-item measure that screens for PTSD symptoms in children who are 8 years old and above,” Professor Hiller says.
CRIES-8 is not a definitive diagnostic tool, Professor Hiller adds, but will flag if a young person may be experiencing PTSD symptoms. It does not require them to disclose traumas or maltreatment.
Listen to the child
In Australian research at Monash University every study participant, from all types of care, described at least one time where they raised health concerns but were not taken seriously. One participant shared their experience.
“I once went into hospital because I had appendicitis. They had me in the hospital for a week beforehand because they didn’t believe that I actually had pain. They sort of just treated me like crap. They actually then removed the appendix and discovered it was appendicitis.” [Young Person 09]
The young people in this study also discussed how carers appeared to adopt a crisis-driven approach to care leaving underlying health issues, such as depression or endometriosis, unaddressed.
“…when I was in a fight and injured my hand, it was straight away, let’s go to the doctors that night … You’d get people saying, if you’re sick let us know. But apart from that, there wasn’t much conversation around any sort of health.” [Young Person 01]
Health education
Young people want to be empowered to weigh in on their own health matters.
“150% we need to be included because our voices matter, massively. Because it’s our bodies, it’s our self, it’s our minds, it’s our hearts. We need to be part of it and not just be controlled like some puppet.” [Young Person 05]
Young people in OOHC highlight the opportunity for health education by carers and health care professionals.
“…no one teaches you anything. There is zero, nothing like contraception. Nothing like that. “Oh, here is medicine, we’ll give you the safe amount.”” [Young Person 03]
Reduce placement breakdown
Placement instability has a significantly negative impact on health including, impairment of socio-emotional development, non-verbal skills and development of gross and fine motor skills. It can also create fragmented health records, educational vulnerability and increase the risk of significantly worse criminality.
In New South Wales, over a quarter of all children had four or more placements within the first six years of OOHC. Placement stability is strongly linked to caregiver satisfaction. Hence, The Pathways of Care Longitudinal Study recommends that treatment for a child’s behaviour problems should be arranged as early as possible to support the child and caregiver needs.
MAKING IT LAW
Dr Susan Webster, from the Melbourne Medical School at University, says laws are needed to create real change. In Australia, there are no statutory requirements for health assessments of children in OOHC despite the national standards being in place for over a decade.
Dr Websters research on the laws around healthcare for children in OOHC highlighted “weaknesses” in Victoria’s jurisdiction. She said that similar weaknesses exist at varying levels in other jurisdictions across Australia.
“I believe the answer is legislative change that assigns specific responsibility and accountability for the health care of children and young people in OOHC to health services. This has been the case in England and some leading states in the United States,” Dr Webster says.
Another critical need is permanent and accessible health records for children who have experienced maltreatment. This is impossible without interoperability; the ability of computer systems to connect and communicate with each other. Emma Hossack, Chief Executive of the Medical Software Industry Association , told Oncology Republic’s sister publication The Medical Republic last year that lack of incentive, not ability, is holding Australia back from interoperability. Many digital health experts at a recent summit called for legislation of interoperability standards in healthcare.
Children, however, have no control over legislation. But Dr Webster says that every time a child presents in general practice it is an opportunity to make a real difference.
“Whether it is an isolated encounter or a longer episode of care, a critical contribution is having unconditional positive regard for children in this vulnerable population,” she says.
*Name changed for privacy
References
[1] McLean K, Clarke J, Scott D et al. Foster and kinship carer experiences of accessing healthcare: A qualitative study of barriers, enablers and potential solutions. Child. Youth Services. Rev. 2020, June.
[2] McLean K, Hiscock H, Goldfeld S. Timeliness and extent of health service use by Victorian (Australian) children within first year after entry to out-of-home care: Retrospective data linkage cohort study. Child. Youth Services. Rev. 2022, March.
[3] Sariaslan A, Kääriälä A, Pitkänen J et al. Long-term Health and Social Outcomes in Children and Adolescents Placed in Out-of-Home Care. JAMA Pediatr. 2022, 1 Jan.
[4] Jackson Foster LJ, Beadnell B, Pecora PJ, Intergenerational pathways leading to foster care placement of foster care alumni’s childrenChild Fam Soc Work. 2015, Feb; 20(1).,
[5] Nathanson D, Tzioumi D, J Health needs of Australian children living in out-of-home care. Paediatr Child Health. 2007 Oct;43(10)
[6] Smales M, Savaglio M, Morris H, et al. “Surviving not thriving”: experiences of health among young people with a lived experience in out-of-home care. Int J Adolesc Youth. 2020, online 1 July.
[7] Font SA, Caniglia M, Kennedy R, Noll JG. Child Protection Intervention and the Sexual and Reproductive Health of Female Adolescents Ages 13 to 17 Years. JAMA Pediatr. 2022, 21 February.
[8] Moeller-Saxone K, McCutcheon L, Halperin S et al. Meeting the primary care needs of young people in residential care. Aust. Fam. Physician 2016, October.
[9] Hallam K T, Fernandes M, Pavlis A. Better off alone? Comparing the substance use, mental health and trauma risks of youth alcohol and other drug service users either living in out of home care, living with parents or experiencing homelessness. Drug Alcohol Rev. 2021, 9 September.
[10] Shmerling E, Creati M, Belfrage M, et al. The health needs of Aboriginal and Torres Strait Islander children in out-of-home care. J Paediatr Child Health. 2019, online 13 September.
[11] Hiller RM, Meiser-Stedman R, Elliott E, et al. A longitudinal study of cognitive predictors of (complex) post-traumatic stress in young people in out-of-home care. J Child Psychol Psychiatry. 2021 Jan;62.
