NACCHO
National Aboriginal Community Controlled Health Organisation
Aboriginal health in Aboriginal hands
Submission
August 2020
About NACCHO
NACCHO is the national peak body representing 143 Aboriginal Community Controlled Health Organisations (ACCHOs) Australia wide on Aboriginal and Torres Strait Islander health and wellbeing issues. NACCHO’s work is focused on liaising with governments, its membership, and other organisations on health and wellbeing policy and planning issues and advocacy relating to health service delivery, health information, research, public health, health financing and health programs. Our members provide about three million episodes of care per year for about 350,000 people across Australia, including about one million episodes of care in very remote regions.
Sector Support Organisations, also known as affiliates, are State based and represent ACCHOs offering a wide range of support services and Aboriginal and Torres Strait Islander health programs to their members including advocacy, governance and the delivery of state, territory and national primary health care policies.
ACCHOs range from large multi-functional services employing several medical practitioners and providing a wide range of services, to small services which rely on Aboriginal Health Workers/Practitioners and/or nurses to provide the bulk of primary health care services, often with a preventive, health education focus. Our 143 ACCHOs operate approximately 700 facilities, including about 450 clinics. ACCHOs and their facilities and clinics contribute to improving Aboriginal and Torres Strait Islander health and wellbeing through the provision of comprehensive holistic primary health care, and by integrating and coordinating care and services. Many provide home and site visits; medical, public health and health promotion services; allied health; nursing services; assistance with making appointments and transport; help accessing childcare or dealing with the justice system; drug and alcohol services; and help with income support.
Collectively, we employ about 6,000 staff, 56 per cent of whom are Indigenous, making us the second largest employer of Aboriginal and Torres Strait Islander people in the country.
Any enquiries about this submission should be directed to:
NACCHO
Level 5, 2 Constitution Avenue
Canberra City ACT 2601
Website: naccho.org.au
Introduction
The submission is written by the National Aboriginal Community Controlled Health Organisation (NACCHO) with valued input from the Aboriginal Health and Medical Research Council (AH&MRC), the Aboriginal Health Council of Western Australia (AHCWA) and the Queensland Aboriginal and Islander Health Council (QAIHC).
A large proportion of Aboriginal and Torres Strait Islander peoples who currently live with disability are not aware of the pathways to support. Aboriginal and Torres Strait Islander peoples are twice as likely to experience a disability than other Australians (9% with a severe condition compared to 4% for non-Indigenous Australians)1. In 2018, there were over 200,000 Australians with ASD2 but the prevalence of ASD for Aboriginal and Torres Strait Islander peoples is largely unknown and suspected to be underdiagnosed due to barriers to access diagnostic services3 or misdiagnosis with schizophrenia or Foetal Alcohol Spectrum Disorder (FASD)4. Aboriginal and Torres Strait Islander peoples are among the most disadvantaged in Australia and the impacts of disability further exacerbates the divide in health and wellbeing outcomes for Aboriginal and Torres Strait Islander peoples and other Australians5.
For the purposes of this submission, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders definition of Autism Spectrum Disorder (ASD; used interchangeably with autism) has been used as all mental health professionals use the DSM as a diagnostic tool in some way. ASD is an early onset neurodevelopmental disability characterised by difficulties in social interaction and communication coupled with restrictive and repetitive behaviour or interests 6,7. ASD is a lifelong condition8 and is typically diagnosed earlier in life (age 2-3), while higher functioning individuals may have a delayed diagnosis.9
This submission will look at the following four specific areas from the Terms of Reference for the Select Committee on Autism:
- current approaches and barriers to consistent, timely and best practice autism diagnosis.
- international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity.
- the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people.
1 AIHW. (2017). Disability in The Aboriginal and Torres Strait Islander Health Performance Framework Report, AIHW: Canberra. 2 ABS. (2019) ibid 3 Bailey & Arciuli. ibid 4 Roy & Balaratnasingam (2010). Missed diagnosis of autism in an Australian Indigenous psychiatric population. Australasian Psychiatry, 18(6). 5 Bailey & Arciuli. ibid 6 American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.) American Psychiatric Association Publishing. 7 Bailey & Arciuli. (2020). Indigenous Australian’s with autism: A Scoping review. Autism, 24(5). 8 ABS. (2019). Autism in Australia from Disability, Ageing and Carers, Australia: Summary of Findings, 2018. ABS: Canberra. 9 Wilson & Watson. (2011). Autism spectrum disorder in Australia Indigenous families: issues of diagnosis, support and funding. Aboriginal and Islander Health Worker Journal, 35(5).
- the adequacy of funding for research into autism.
Current approaches and barriers to consistent, timely and best practice autism diagnosis
Despite ASD being the most diagnosed neurodevelopmental condition with research suggesting 2% of Australians have ASD, little is understood about ASD in Aboriginal and Torres Strait Islander peoples10. What is known is that Aboriginal and Torres Strait Islander peoples are less likely to access services than other Australians for several reasons, including limited availability to culturally competent services, a lack of accessible culturally competent services, poverty and marginalisation and lack of trust in government 11.
Case study
In Perth, the wait lists for Paediatric Development Assessments is 6 months in the private sector and 8-10 months in the public sector. Wait lists in regional and remote areas are significantly longer than this. Initial physical and developmental assessments must must be face to face, therefore someone from a regional or remote area has to endure the long waiting times and then either travel to Perth or wait for a specialist to come to the area. Specialists travel infrequently out from Perth.
Whilst waiting, patients are without diagnosis so unable to receive additional education funding or support. This makes it harder to learn as schools cannot assign specialist help to assist. Families cannot receive support without a diagnosis so there is a lot of trial and error to figure out how to assist a child with homework or other tasks. Without a diagnosis, behaviour is often labelled as problematic and has social impacts on both the child and family. Without a diagnosis, families are also unable to receive Early Childhood Early Intervention (ECEI) or NDIS assistance. A faster diagnosis could take away a lot of stress and pressure on families, by removing the uncertainty and opening up access to services and support.
Aboriginal and Torres Strait Islander peoples living with ASD have limited access to trained personnel able to reliably diagnose ASD. There needs to be other ways of providing access to services for those areas that lack access to trained personnel. This could include solutions such as FIFO clinicians and telehealth assessments, noting that these come with their own issues including access to culturally competent health providers, lack of connectivity and the availability of services.
There is evidence that Aboriginal and Torres Strait Islander peoples with ASD are often misdiagnosed or miss out on a diagnosis altogether12. Roy and Balaratnasingam (2010) re-
10 Lilley, Sedgwick & Pellicano. (2019). We look after our own mob: Aboriginal and Torres Strait Islander Experiences of Autism. Macquarie University: Sydney. 11 Lilley, Sedgwick & Pellicano. ibid 12 Lilley, Sedgwick & Pellicano. Ibid.
examined the clinical notes of 14 Aboriginal patients diagnosed with schizophrenia to reassess their diagnoses. The research team used a combination of diagnostic assessments, interviews with carers and review of medical histories. It was suspected that a number of patients may have had alternative diagnoses and It was found that 13 of the 14 patients were considered to have a diagnosis of ASD that was missed in the initial assessment13. This obviously has implications for treatment as misdiagnosis can lead to over reliance on drug treatments over behaviour and communication therapies recommended for ASD14. Hearing loss and chronic otitis media, which has a high prevalence in Aboriginal and Torres Strait Islander children, can also delay or mask the diagnosis of ASD. This again emphasises the need for detailed development and medical history to ensure accurate diagnosis and timely access to services to enable a diagnosis.
Another factor in underdiagnosis / misdiagnosis of ASD in Aboriginal and Torres Strait Islander peoples is the lack of culturally appropriate tools and clinicians needed for an accurate diagnosis15. The National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia recommends using standard tests for diagnosis of ASD but cautions the use in diagnosis of Aboriginal and Torres Strait Islander peoples with ASD as they have not been fully tested in Aboriginal and Torres Strait Islander communities16. Any assessment should be evaluated in the cultural context, environment, and traditions in which the individual lives17. Any ASD tools and training for clinicians developed need to be culturally appropriate including language, images and interpretation services and allow parents and the broader family unit to be a part of the assessment process. Tools and resources need to provide advice to families and health professionals on recognising identifying traits and awareness of when to seek health advice.
International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity
Aboriginal and Torres Strait Islander peoples often require more support than other Australians to gain access to, and participate in, disability services. The ACCHO Model of Care recognises cultural needs (for example, the concept of taking the appropriate time to establish a trusting and respectful relationship with the whole family unit and their cultural values) and the additional needs of a population with high co-morbidities who often have poor housing, are financially disadvantaged and have limited access to transport. This Model of Care has proven to be successful, and additional costs at this point will help mitigate far greater costs down the track. There is considerable evidence that early intervention is the
13 Roy & Balaratnasingam. Ibid. 14 America Psychiatric Association. Ibid. 15 Lindblom. (2014). Under-detection of autism among First Nations children in British Columbia, Canada. Disability and Society, 29(8). 16 Whitehouse et al., (2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism: Brisbane. 17 Whitehouse et al. ibid.
most cost effective and has most impact in tackling health issues18 including people with ASD.
Culture and language barriers can affect the presentation of ASD19 and cultural norms of not making eye contact can make diagnosis difficult20. For these reasons (and others) Aboriginal and Torres Strait Islander health workers and/or ACCHOs are essential as cultural consultants to help mainstream health professionals diagnosing or treating Aboriginal and Torres Strait Islanders with ASD. cultural safety is important in the treatment of Aboriginal and Torres Strait Islander people to enable individual empowerment and to ensure services meet the patients’ health care needs, as well as their social and cultural identity.
Case study:
From a young age, it’s found that no one would provide support, because ‘the child is a child, and just has a lot of energy and is just a fussy child’ (wouldn’t eat different coloured food etc.). Given that in smaller communities, everyone knows everyone, and is related to someone that knows someone, to diagnose a child (a family member perhaps) with things such as autism is quite daunting for everyone involved.
This means the guardian has to seek advice elsewhere, and obviously early intervention such as speech therapy and occupational therapy is so important.
There is also a need for more awareness around it [ASD], and more support for the guardian/s that may be going through it with their children. [I] also know of another circumstance, where there is shame in asking for help, but the services are aware of the situation, so therefore should try to reach out more.
ASD ranks among the most stressful of childhood disabilities for parents21 and parenting a child with ASD can be isolating, especially for Aboriginal and Torres Strait Islander families living in remote locations22. Respite for parents and families of autistic children is recommended as best practice but respite services in Aboriginal and Torres Strait Islander communities are rarely available. The importance of family and community is often a key practical and emotional support23 for Aboriginal and Torres Strait Islander families with autistic children. However, as family and community are often the only carers and support peoples available, respite options are even more limited, and carer burn out can occur.
18 Bell et. Al (2000). Aboriginal community controlled health service. In General Practice in Australia: Department of Health and Aged Care: Canberra (now Department of Health). 19 Whitehouse et al., ibid. 20 Roy & Balaratnasingam. Ibid. 21 Wilson & Watson. Ibid. 22 Lilley, Sedgwick & Pellicano. Ibid. 23 Lilley, Sedgwick & Pellicano. Ibid.
Case Study
Interviewees in the Lilley, Sedgwick and Pellicano (2019) research raised their concerns for the limited support for Aboriginal and Torres Strait Islander families looking after children with disabilities: “[I] see a lot of mothers particularly because they’re the main caregivers in this areas with what I would call post-traumatic stress. We see that all the time.”
“Yeah, it took me a long, long time to get there, it took me a long time – there were nights where I would just cry my eyes out because I had no idea what to do with him, because nobody would help.” 24
The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people
Navigating the mainstream health and human services system can be complex and frustrating, particularly so for Aboriginal and Torres Strait Islander communities who face additional challenges in terms of access and delivery. This is partly evidenced by the proportionally poor take-up of the NDIS by Aboriginal and Torres Strait Islander peoples to date. Currently only 6.2% of NDIS participants are Aboriginal and Torres Strait Islander peoples (22,749 active participants as of 30 March 202025) which is considerably less than the percentage thought to have a significant disability. The percentage of NDIS participants who are Aboriginal and Torres Strait Islander is indicative of the numbers of Aboriginal and Torres Strait Islander peoples with NDIS plans. It is not, however, necessarily representative of the extent to which Aboriginal and Torres Strait Islander peoples are receiving assistance under those plans as a result of services (or appropriate services) not being available.
In 2018, ASD was the largest category of disability of participants in the NDIS, with 29% of active participants having ASD as the primary diagnosis26. Aboriginal and Torres Strait Islander participants recorded slightly lower rates of NDIS plans with an ASD primary diagnosis (28%) as other Australians (31%)27. Out of the 28% of Aboriginal and Torres Strait Islander peoples diagnosed with ASD and on NDIS plans, there were approximately 10% of who were using their NDIS plans as of 2017-2018 which is significantly less than the number of active plans.
With a lack of prevalence data of Aboriginal and Torres Strait Islander peoples with ASD, it is difficult to assess if the needs of Aboriginal and Torres Strait Islander peoples with ASD are being met, though we suspect they are not.
In WA, the NDIA have funded positions in some ACCHOs, known as Evidence, Access and Coordination of Planning (EACP) positions. This position addresses some of the barriers that prevent Aboriginal and Torres Strait Islander peoples from entering the NDIS. These include challenges such as contacting the NDIS and completing the forms to request access,
24 Lilley, Sedgwick & Pellicano. ibid. pg. 18. 25 NDIA (2020). March COAG Disability Reform Council Quarterly Report. pg 17. NDIA: Canberra. 26 NDIA (2018). Outcomes for participants with Autism Spectrum Disorder (ASD). NDIA: Canberra 27 NDIA (2019). Aboriginal and Torres Strait Islander participants. NDIA: Canberra.
including obtaining appropriate clinical or other assessments. The EACP position is based in an Aboriginal Medical Service, and, with the consent of the individual, they are able to work with the NDIA National Access Team to facilitate the request for access process, utilising existing medical records and coordination of additional evidence where required. These positions should be funded in all jurisdictions for more streamlined access to the NDIS and better coordination of care through NDIS packages.
Community Connector positions were originally funded in remote areas to promote the understanding and awareness of the NDIS and to connect potential participants with NDIS planners. This program has now been expanded to become the National Community Connector Program, which funds Community Connectors in urban, regional and rural communities. NACCHO will work with ACCHOs to engage these positions in communities to enable increased awareness of and access to the NDIS and provide support for Aboriginal and Torres Strait Islander peoples to access disability services.
The Early Childhood Early Intervention (ECEI) pathway is to support children 0-6 years old with disabilities or developmental delays access the care needed to undertake daily activities. This has been unavailable in remote areas since its inception resulting in delays in assessment and access to care for Aboriginal and Torres Strait Islander children. Consequently, children have less access to disability services than they did prior to the NDIS roll-out. There are also concerns about the eligibility of ECEI for Aboriginal and Torres Strait Islander children with ASD. Those classified as “higher functioning” have been turned away due to not having “obvious” impediments with speech and language issues.
Whilst Aboriginal and Torres Strait Islander peoples have a clear preference for using Aboriginal and Torres Strait Islander services, the reality is that the limited availability of NDIS service providers will mean that some Aboriginal and Torres Strait Islander peoples will need to access a mainstream service. ACCHOs are best placed to provide services for Aboriginal and Torres Strait Islander peoples28 so the focus should be on increasing capacity of ACCHOs to provide services.
Where no ACCHO or other Aboriginal Community Controlled Organisation exists, mainstream providers must be culturally competent when providing services to Aboriginal and Torres Strait Islander peoples. Affiliates and/or ACCHOs should be commissioned to undertake the training of staff where possible (many ACCHOs are also Registered Training Organisations). Whatever the mechanism, mainstream disability organisations need to form relationships with their local ACCHOs to ensure disability and health service provision is well integrated as many people with a disability will be accessing an ACCHO for their (often complex) health needs. ACCHOs should also consider registering to deliver the role of support coordination in this context ensuring that a participant has a trusted culturally appropriate professional supporting them to access providers and navigate to mainstream agencies including health, justice, and child protection.
28 Bell et al. ibid
The adequacy of funding for research into autism
Despite the recognition of the higher rates of disability and chronic health conditions in Aboriginal and Torres Strait Islander peoples, very little research has been conducted about ASD in these communities29. The studies that have been published to date provide evidence on missed diagnosis or wrongful diagnosis30, evidence about other childhood disabilities or provide analysis on the uptake of the, now discontinued, Helping Children with Autism (HCWA) package provided by the Commonwealth Government31. An absence of research means there is a lack of understanding of how Aboriginal and Torres Strait Islander peoples perceive and experience ASD, the supports available to children and families32 and impacts that culture and language may have on the diagnostic process. Currently there is limited awareness of ASD in Aboriginal and Torres Strait Islander communities which means children and families could be missing out on the support that is needed and deserved.
More research needs to be conducted on ASD in Aboriginal and Torres Strait Islander communities. Any research must be conducted in partnership with communities to understand local needs around ASD and develop an integrated model of care. Gidgee Healing Aboriginal Corporation (Gidgee Healing) in Mount Isa, Queensland have developed a model for interventions into FASD that could be evaluated and replicated for ASD.
Case Study
The first stage of the program was to work with community over a period of 12 – 18 months to understand what community needed from a FASD program, and how Gidgee Healing, in partnership with Griffith University, could deliver an improved FASD model that is integrated into their holistic model of care. The great strength of this model is that it was community driven and managed, resulting in a shift of focus from previously a clinical specialist setting to a holistic primary health care model run by Aboriginal and Torres Strait Islander heath workers and practitioners (ATSIHW/Ps) who are from that community.
The result is that Gidgee Healing has demonstrated that there is another way to support children and families affected by FASD which transfers a traditionally clinical approach into a community health approach. The long-term consequences of this approach remain to be seen, however the logical impact of the community driving the response is that the community has greater awareness and understanding of the causes of FASD and the best ways to support children and families impacted by it.
Research into ASD needs to be determined and lead by Aboriginal and Torres Strait Islander people and communities with decisions on data collection, analysis and sharing sitting solely with them. This is reinforced by the National Agreement on Closing the Gap as a key priority
29 Lilley, Sedgwick & Pellicano. Ibid. 30 Roy & Balaratnasingam. Ibid. 31 Wilson & Watson. Ibid. 32 Lilley, Sedgwick & Pellicano. Ibid.
reform for closing the gap in health disparities between Aboriginal and Torres Strait Islander people and other Australians.
Conclusion
The NDIA Expansion to the Community Connectors program will see Community Connectors embedded within Aboriginal and Torres Strait Islander communities which will enable provision of information on a range of disabilities, including ASD to people in need. This is not enough, more needs to be done to ensure Aboriginal and Torres Strait Islander peoples with ASD get the information, support, diagnosis, and services needed. This includes supporting NACCHO, Affiliates and ACCHOs to provide disability services and support to Aboriginal and Torres Strait Islander peoples with a disability to uphold the role of Community Controlled Health as outlined in the Closing the Gap report 202033.
33 The Lowitja Institute. (2020). Close the Gap Report. Close the Gap Campaign Steering Committee: Canberra.