Rose, Elisha --- "Even more disadvantaged: Children with disability in out of home care" [2022] PrecedentAULA 39; (2022) 171 Precedent 18

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EVEN MORE DISADVANTAGED

CHILDREN WITH DISABILITY IN OUT OF HOME CARE

By Elisha Rose

Some of the most vulnerable people in Australia are children and young people (0–18 years of age) living away from their families of origin in out of home care. Out of home care is a short, medium or long term arrangement where children and young people who cannot live with their family live with other people. Sometimes this is with extended family, within their kinship group, with a foster family or in residential care. Children and young people who are both in out of home care and living with a disability are even more disadvantaged by the circumstances in which they find themselves, through absolutely no fault of their own.

All children and young people who enter the out of home care system have experienced trauma or what is now commonly described as adverse childhood experiences, or ACEs. The very act of removing a child or young person from their home causes them to suffer trauma: ‘the transition into foster care is a significant life transition that is accompanied by trauma, loss and grief’.^[1]

Adverse childhood experiences include familial abuse, neglect, parental separation and incarceration of a parent. The more ACEs a child or young person has had, and the more severe those traumas have been, the more disadvantaged and traumatised they are likely to be. In order to support children and young people with ACEs to process and unpack their trauma, we need a system that rallies to provide them with the best possible care, enabling them to thrive rather than merely survive.

The latest Australian Institute of Health and Welfare data shows that 45,996 children and young people in Australia were in out of home care in June 2020.^[2] Sadly, that number increases steadily by about 1,000 each year (around 7 per cent). Of those 45,996 children and young people in care, 18,862 (or 41 per cent) identified as First Nations people, even though only 5.9 per cent of people across Australia under 18 identify as such.^[3] In other words, First Nations children and young people are overrepresented in out of home care: at 11 times the rate of other children and young people.^[4]

A smaller subset of this vulnerable population also identify as having a disability: 6,424, or 14 per cent of children and young people. However, data around disability status is poor at best, with the disability status being available for only 57 per cent of the children and young people in care.^[5] Therefore this number should be treated with caution.

There are no national figures for the number of First Nations children and young people in care who have a disability, but Bringing Them Home: Report of the National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families (Bringing Them Home report) provides some startling figures on First Nations children with disability in care in the Northern Territory:

‘Indigenous children with disabilities are over-represented in all welfare statistics, particularly in non-Indigenous substitute care. In May 1995 Aboriginal children represented 79% of all children with disabilities in care in the NT. Just over one-half (53%) of children in care were Aboriginal and almost half of these children had disabilities.’^[6]

It would not be unreasonable to assume that these figures are representative of other jurisdictions, but as there is no agreed national definition of ‘disability’ (the definitions contained in the various Disability Acts vary in each state), it is difficult to have any certainty about the national data. For example, as defined in the Disability Services Act 1993 (WA), a disability can be chronic or episodic,^[7] whereas the Disability Inclusion Act 2014 (NSW) does not have such a qualification.^[8]

The lack of a uniform definition gives rise to another issue: unidentified disability. If there is no agreed definition of disability, there is often a lack of accurate recording and sometimes even diagnosis:

‘simply being in foster care confounds continuity of physical and mental health care. Foster parents often know only limited details of the child’s medical history and even less about the biological family. Privacy and confidentiality issues abound. Misplaced or lost records of health care and education are the norm as the child or youth moves through the foster system. Longitudinal checkups by a single multidisciplinary team of health care providers almost never happen, even though fostered children are at far higher risk for serious disorders, including mental illnesses, than children who live in stable families.’^[9]

These themes are replicated in child protection settings across the nation, so much so that the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability (Disability Royal Commission) devoted an entire hearing to the experience of First Nations children with disability in out of home care.^[10] Evidence was given by First Nations children and young people with lived experience of the out of home care system, and by their carers, allied health professionals and academics.^[11]

KEY ISSUES

In addition to a lack of diagnosis of disability and the lack of recorded disability data, children and young people in care also face other disadvantages: changes in placements; changes in the social workers managing their cases; having their care concerns ignored or dismissed; a lack of services in remote and regional areas; and the complexity of navigating the National Disability Insurance Agency (NDIA).

Changes in placements

Changes in placements are a very real problem. Nearly 16 per cent of children and young people who had been in out of home care for two or more years at 30 June 2020 had moved home twice; nearly 10 per cent had moved three to four times.^[12] Apart from the obvious detriment and disruption a change of placement causes to an already traumatised child, the move also means that the knowledge base of a foster carer or caseworker about a child’s or young person’s needs is often forgotten or buried deep within the child’s case file. This does nothing to ensure that the child will receive the services and support they need.

This knowledge loss is compounded by potential geographical changes (a new home means a new school, new doctor, and new therapist/s), which make children and young people more likely to exhibit the types of stress behaviours that lead to placement breakdown.^[13]

However, if the child or young person had had their disability identified early on, and they have a well-funded National Disability Insurance Scheme (NDIS) plan and therapies and other supports in place, they would possibly be more able to function as part of the family and community, and placement breakdown could be avoided.

Carers’ concerns ignored

There are 24,578 carer households in Australia.^[14] All carers for children and young people in Australia, whether foster carers, kinship carers or relative carers, are volunteers, and, while they are carefully screened and attend basic training before children and young people are placed in their care, carers very much ‘learn on the job’.

During a Disability Royal Commission hearing, when questioned about what training she had as a carer of a First Nations child, witness ‘Leah’ gave evidence that she had little to no training on caring for a child with a disability:

‘None whatsoever, in my recollection. I did attend some courses on children with trauma, and I attended one course that was called Therapeutic Crisis Intervention which was quite – I think it was a 2-day course. But specifically about disabilities and how to access the NDIS, how to work with therapists, how to do an individual education plan for a child, no, none of that whatsoever. That was all self-taught and through my own learning.’^[15]

That carer’s experience is not unique. Carers are often the ones to identify a child’s or young person’s additional needs, advocate for medical assessments, and push for therapies to be put in place. As carers look after these children and young people every day, they soon become aware of their needs, yet a caseworker who might have 20 or more children and young people in their caseload will have the final say about what services that child or young person can access. When asked about what supports child protection services had put in place for the child with disability in her care, ‘Leah’ told the Disability Royal Commission that there was:

‘[a]bsolutely [no support] whatsoever, and everything only came about from my research and my inquiry and my advocacy. There was nothing that the Department ... ever did to provide resources or support’.^[16]

It is carers who collect dysregulated children from school and console them when they wake in the night; it is carers who put in hundreds of hours of additional therapy with the children in their care. Their concerns and suggestions should be considered an important part of the work of the care team for the child or young person.

Remote locations

Paediatric and therapy waitlists in metropolitan areas across Australia are long: sometimes a wait of up to two years or more is normal for a child needing to access speech or occupational therapy.^[17] This wait is even longer in remote and regional locations, where there are fewer professionals, longer distances to travel to access those professionals, and sometimes a reliance on travelling services only.^[18] Placement principles in legislation across Australia^[19] focus on keeping First Nations children and young people in care on country with family or carers from their kinship group, but the lack of services make attaining this goal less likely – with significant consequences for the child.

This was also identified in the Bringing Them Home report, in which the NSW Council for Intellectual Disability submitted that:

‘Aboriginal children and young people with intellectual disability are in a position of double jeopardy, being devalued not only on the basis of their disability, but also their Aboriginality. Where Aboriginal children and young people with disabilities originate from rural and remote communities they are multiply disadvantaged’.^[20]

Misdiagnosis

Often children and young people in care have their extra needs dismissed as relating to trauma alone. While it may be true in some situations that extra needs arise solely as a result of trauma, it is very dangerous to attribute the source of all extra needs to this only. Such an approach means that children often miss out on the crucial window of early intervention (before five years of age^[21]) for addressing concerns that are beyond those typically related to trauma. It takes a combination of skilled and experienced doctors, allied health workers and therapists just to tease apart which issues are related to trauma and which might actually be evidence of disability; it is even more difficult, thereafter, to provide regular and targeted culturally competent therapy.

While the need to avoid unnecessary labelling should be kept in mind, a view of this kind sometimes leads to children and young people not getting a diagnosis in a timely manner. If this is the case, they do not get the help they need.

Shortfalls in the National Disability Insurance Scheme

Children and young people in out of home care are treated no differently to other participants in the NDIS. They aren’t afforded NDIS planners who have particular expertise in managing the complexities of their situation. In many cases, NDIS planners have no working knowledge of the impact of adverse childhood experiences.

Instead, children and young people in out of home care are allocated a regular planner who is probably unlikely to understand how the out of home care system functions in their state, how to manage the likelihood of very frequent changes in protection caseworkers, and how to provision for a child who is likely to move placements while in the system. The NDIS system is simply not set up to prioritise the needs of this special subset of clients.

In addition, child protection social workers and caseworkers often have very little understanding of the NDIS system and are not specifically trained to complete access requests or prepare for planning meetings.^[22] Carers may find themselves in a similar position, and have even less say than caseworkers. Often it falls to reports provided by therapists to advocate for the needs of the children and young people, because the therapist may be the only consistent person in the child’s care journey.

ONLY A START

A starting point for addressing the disadvantages of this group is proper and complete collection of data. Data collection formed part of the scope of the Disability Royal Commission, with the full recommendations of the Royal Commission due in early 2023. When the true extent of need is understood, more advocacy work can be done to target the unique needs of these children and young people.

Reform that enables access to the NDIS is an obvious step forward, as is the appointment of specialist NDIS planners. Another option that would benefit children and young people in out of home care is the expansion of access to the NDIS for psychosocial conditions such as post-traumatic stress disorder (PTSD). While a child under six who has PTSD and demonstrates a functional capacity deficit will most likely meet the access criteria under the early childhood early intervention stream, when the child is over the age of six their PTSD must be considered permanent by a psychiatrist in order for them to access NDIS funding for their future.

It seems nonsensical that there is no way for a child or young person over six years of age to access NDIS funds temporarily in order for them to attend therapies that will assist them to overcome their PTSD. In the absence of NDIS access, a child or young person in this position will become reliant on the child protection system to fund very costly therapies on an ongoing basis, and will be at the whim of ever changing caseworkers who might disagree with a previous decision made about their therapy needs.

There can be little doubt that more advocacy is required from peak bodies in both the disability and out of home care sectors about the unique needs of children and young people with disability in out of home care, especially from First Nations controlled organisations, which can provide unique and culturally competent advice about what First Nations children and young people with disability (and their families) need. It takes time and careful resourcing to ensure that consumer voices are heard and to improve service delivery.

Of concern is the complexity for First Nations families of accessing the NDIS in the first place. This may lead to a reliance on child protection departments, in situations where the NDIS would be a more appropriate service for providing supports. Some front end funding to support wider access is critical in this respect.

In the truest sense of the phrase, ‘time is of the essence’. Childhood is fleeting; we must prioritise, to the best of our ability, the wellbeing, development and care of this vulnerable group of children and young people who face the double disadvantage of being in out of home care and having a disability.

Elisha Rose is a lawyer and advocate with lived experience as a foster carer and special guardian.

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^[1] MB Mitchell, ‘“No one acknowledged my loss and hurt”: Non-death loss, grief, and trauma in foster care’, Child and Adolescent Social Work Journal, Vol. 35, No. 1, 2018, 1–9, 1 <https://link.springer.com/journal/10560/volumes-and-issues/35-1>.

^[2] Australian Institute of Health and Welfare (AIHW), Child Protection Australia 2019–20 (Report, 18 May 2021), data table 5.1 <https://www.aihw.gov.au/getmedia/c3b0e267-bd63-4b91-9ea6-9fa4d14c688c/aihw-cws-78.pdf.aspx?inline=true>.

^[3] Ibid, data table P3.

^[4] Ibid, 47

^[5] Ibid, 53.

^[6] Human Rights and Equal Opportunity Commission, Bringing Them Home: Report of the National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families (Bringing Them Home), 1997, ch 21, 398 <https://humanrights.gov.au/sites/default/files/content/pdf/social_justice/bringing_them_home_report.pdf>.

^[7] Disability Services Act 1993 (WA), s3.

^[8] See Disability Inclusion Act 2014 (NSW), s7.

^[9] PC Hébert and N MacDonald, ‘Health care for foster kids: Fix the system, save a child’, Canadian Medical Association Journal = Journal de L’association Medicale Canadienne, Vol. 181, No. 8, 2009, 453, E123–4 <https://doi.org/10.1503/cmaj.091627>.

^[10] Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Disability Royal Commission), Public hearing 16: First Nations children with disability in out-of-home care (Report, 17 to 24 September 2021) <https://disability.royalcommission.gov.au/public-hearings/public-hearing-16>.

^[11] Disability Royal Commission, Witness list and expected order of witnesses, Public hearing 16: Experiences of First Nations children with disability in out-of-home-care <https://disability.royalcommission.gov.au/system/files/2021-09/Public%20hearing%2016%20-%20Witness%20list.pdf>.

^[12] AIHW, above note 2, data table S6.12.

^[13] Australian Institute of Family Studies, ‘What contributes to placement moves in out of home care?’, Child Family Community Australia Paper No. 61, 7 <https://aifs.gov.au/cfca/sites/default/files/publication-documents/2107_cfca_61_what_contributes_to_placement_moves_in_out-of-home_care.pdf>.

^[14] Ibid, data table S7.1.

^[15] Disability Royal Commission, Transcript of Proceedings, 21 September 2021, Day 3, 189, lines 30–35 <https://disability.royalcommission.gov.au/system/files/2021-10/Transcript%20Day%203%20-%20Public%20hearing%2016%2C%20Virtual.pdf>.

^[16] Ibid, 196, lines 19–20.

^[17] C Fitzsimmons, ‘Why children are waiting up to a year for occupational therapy’, The Sydney Morning Herald (21 July 2019) <https://www.smh.com.au/lifestyle/health-and-wellness/why-children-are-waiting-up-to-a-year-for-occupational-therapy-20190718-p528me.html>; F Lucas, ‘Children are missing out because of a lack of support for communication, experts say’, The Sector (19 May 2021) <https://thesector.com.au/2021/05/19/children-are-missing-out-because-of-a-lack-of-support-for-communication-experts-say/>.

^[18] T Cumming, ‘Lived experiences of seeking support for rural and remote children with developmental challenges’ (White Paper, February 2019) <https://www.royalfarwest.org.au/wp-content/uploads/2019/02/Lived_Experiences_-White_-Paper_T_Cumming_CSU.pdf>

^[19] Some examples of child protection legislation focused on keeping First Nations children and young people with their kinship groups: Children and Community Services Act 2004 (WA), s12; Children and Young People (Safety) Act 2017 (SA), s12; Children and Young Persons (Care And Protection) Act 1998 (NSW), s13.

^[20] Bringing Them Home, above note 6, 399, citing Submission 848 to the Disability Commission.

^[21] BL Baker and KA Feinfield, ‘Early intervention’, Current Opinion in Psychiatry, Vol. 16, No. 5, 2003, 503–9 <https://www.researchgate.net/publication/291814792_Early_intervention>.

^[22] This has been my learning from lived experience, acting as a lawyer for foster carers, and working in advocacy in the out of home care sector.