Submission 75 — Ethnic Disability Advocacy Centre (EDAC) — Select Committee on Autism | External submission

ETHNIC DISABILITY ADVOCACY

CENTRE Inc.

Submission to Select Committee on Autism established by the Senate on 27th November 2019, to Inquire into and Report on the Services, Support and the Outcomes for Autistic

People

July 2020

320 Rokeby Road

Subiaco WA 6008

Website: http://www.edac.org.au

Section 1: Background about EDAC

The Ethnic Disability Advocacy Centre (EDAC) is an independent state-wide organisation that advocates for the rights and interests of people from culturally and linguistically diverse (CaLD) backgrounds with a disability (and their family carers) and is a member of the National Ethnic Disability Alliance (NEDA).

EDAC currently receives recurrent funding from the Australian Department of Social Services (DSS) and the WA Department of Communities - Disability Services. EDAC delivers individual and systemic advocacy services across WA. This includes state-wide CaLD advocacy services and generalist individual advocacy to the North West region of WA (Kimberley and East Pilbara).

Additional project funding is used to undertake systemic advocacy type activity. EDAC generates additional income from its cultural competency training for the disability services sector. This training is delivered in line with the National Standards for Disability Services.

EDAC appreciates the significance of Select Committee on Autism established by the Senate on 27th November 2019, to inquire into and report on the services, support and the outcomes for Autistic People. As an institution that addresses issues related to autism as well as other forms of disability, we are happy to contribute towards this worthwhile discourse.

EDAC acknowledges that the 2010-2020 National Disability Strategy has opened up vast

opportunities for individuals with  disability in obtaining a  full and productive  life as

Australian  citizens and  in  realising their potential through a united approach within

Australian governments and  their  relative  agencies, based on upholding  Australia’s

commitment to the United Nations convention on the Rights of Persons with a Disability.

No doubt, the recent development in the delivery of disability supports and services under the NDIS is significantly changing the way persons living with autism are able to fully

participate in economic, cultural, social,  civil and political  life.  The National Disability

Strategy needs to ensure that the aspirations and needs of people living with autism within marginalised population groups, including CaLD people and Aboriginal and Torres Strait Islander people, are well targeted and included in the provision of equitable services.

Equity here is in reference to meeting people’s special disability, cultural, and other needs to bring them up to an equal state with people with disability in the mainstream and providing CaLD people, and Aboriginal and Torres Strait Islander (ATSI) people equitable opportunities to access the services that are available for all.

Our submission is based on data collected from EDAC clients between January 2017 and December 2019. The clients are CaLD persons living with autism. Effort has been made to

use the terms of reference of the Select Committee as the guiding framework with which the issues raised in our submission are categorised.

Section 2: KEY ISSUES

General Terms:

•  Inquire   into  the   services,  supports  and   life  outcomes   for  people

living  with  autism  and  to  determine  whether  there   is  a  need  for  a

National Autism Strategy.

Autism is a very complex form of disability. There is no unanimity even among experts about its nature and diverse manifestations let alone the appropriate strategies to address it. Scientific knowledge about autism is too technical and alienated from public awareness about the condition especially among the CALD and Aboriginal population living with a disability. Consequently, myths abound about the condition that hinder efficient and effective utilization of NDIS services. Children with Autism Spectrum Disorder (ASD) and their parents/carers are generally positioned as consumers of autism related policies and services. This positioning is consistent with the charity and medical models of disability that portray autism as a problem of the individual. Consequently, charity is provided through funding, supports, and services. The charity and medical models of disability make the Australian Government assume a position of enormous power, knowledge/expertise and authority over parents of children with ASD. This unequal distribution of power and expertise complicates the existing tensions within the autism community especially in CALD and Aboriginal populations, where the level of awareness and education together with the social and economic status do not facilitate timely and effective uptake and utilization of

existing Australian Governments’ services and support related to  disability. There  is

therefore a need for a National Autism Strategy that would reach out to, include and involve all persons and families of people living with autism including the marginalised groups.

•  Look  at productive and meaningful ways to improve  services and support

for  autistic  people  in  the  areas  of  education,  healthcare,  employment,

housing, justice and rights.

The general feeling of our clients is that funding and funding requirements/criteria need to be reviewed. The existing arrangements are quite limiting thus making too many children living with autism unable to access the funding they urgently need. The funding limitations

adversely  affect the  quality and relevance  of  educational,  healthcare, housing, and

employment  opportunities  available and  accessible  to  persons  living  with  autism.

Consequently, their right to independent and dignified livelihood is violated.

Current approaches and barriers to consistent, timely and best practice autism diagnosis

EDAC has found that presenting CaLD families are ill-informed on ASD and often seek support late, delaying vital early intervention. Parents from CaLD backgrounds for instance, have difficulty understanding the assessment process. Often, the assessments involve an interpreter. Some parents skip assessment because they do not understand the reason for the rigorousness of the assessment process. Some clients reported difficulties related to the eligibility of children living with autism in NDIS. Some clients have difficulties in navigating complex health systems that exist in Australia. We have also observed that some Aboriginal clients have not been diagnosed with autism at a younger age so by the time they are in the justice system they are diagnosed with cognitive impairment. Other clients reported that early diagnosis was impeded by lengthy wait list periods of beyond six months.

Recommendation:

Explore innovative ways of encouraging, supporting and sustaining early ASD diagnosis and intervention among CALD persons and other marginalized groups. Involve the affected groups in the exercise so that they can provide their input, own and support the process.

The prevalence of autism in Australia It is difficult to accurately state the prevalence of autism presentations in CaLD families in Australia due to absence of recent, relevant and comprehensive statistics.

Recommendation:

There is need to develop a National Autism Register to monitor autism prevalence. Credible and consistent diagnostic practices should be used to ensure the reported numbers and statistics across the States and Territories are accurate.

Misdiagnosis and under representation in autism data among the Aboriginal and CALD communities and bias in autism assessment and support services. The following issues have been noted in relation to assessment of Autism for EDAC Aboriginal clients:

Lack of access to culturally appropriate assessments
Lack of access to any one on one assessment services 4

Lack of any clear agency or department ownership of conducting assessments, and the associated costs of tests, travel etc.
Lack of service co-ordination for person, family and community.
Maintenance of silos, and unrealistic expectations on person with impairment to engage across multiple services independently
Lack of long-term relationship development, with individual, family, and community – Treated in isolation, if at all, and seen predominately from a western cultural perspective. Regular staff turnover
Lack of follow up and ability to undertake assessments and ongoing development in a culturally appropriate manner – on country
Lack of issue ownership, and limited capacity in many communities, for service agencies to create suitable environment for ongoing development
Shame – Due to feuding, inter family relationship disputes and fear surrounding lack of privacy (real or perceived) some community members may not access local health services, cultural beliefs
Multiple early assessment opportunities are missed, resulting in a large proportion of undiagnosed conditions, including Autism, Fetal Alcohol Spectrum Disorder, Acquired Brain Injury, and other cognitive impairments being left untreated until the person engages with the justice system (including Child Protection services) – and even then not always identified, supported or treated.
There is a clear and persistent lack of connection, compassion or certainty regarding ownership of costs, assessments and services. Instead of a cohesive and community based support structure people with disabilities, their family and/or carers are left to deal with multiple agencies, reports and competing priorities, with no guarantee of achieving a positive outcome.
Diagnosing autism in Aboriginal communities may be neglected to a greater degree as language barriers have proven to be difficult in obtaining accurate development history. Individuals in Aboriginal communities that have been diagnosed with schizophrenia, potentially could have autism.
Misdiagnosis or missed diagnosis occur at many contacts and potential assessment points throughout a person’s life. From child health centres, primary schools,

participation co-ordinators at high school to first contact with the Department of Child Protection and/or WA Police.

Recommendation:

Investigate and address the social-cultural factors that give rise to misdiagnosis, missed

diagnosis and under-representation  in autism data among the  Aboriginal and CALD

communities.

International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity.

It is evident that ASD is dynamic and there have been changes in autism related diagnostic processes as well as recommended services. Stakeholders, especially parents and carers, require undated information on a regular basis in order to make informed decisions. Diagnosing children early with ASD is critical to providing early intervention and support.

Recommendation:

There should be a structured process of following up on changes in autism related knowledge, skills and services as well as updating of the same among relevant stakeholders. This helps in keeping abreast with international best practices. Networks for sharing

experiences  and  emerging  views among  stakeholders  should  be  established  and

operationalised in order to harness good ideas and practices.

The demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life5.stages.

EDAC has noted that there are the following gaps related to adequacy of services provided to persons living with autism at all life stages:

There is a great demand for services of a multidisciplinary nature which require multidisciplinary expertise and experience working in the CaLD and ATSI space
There are few multidisciplinary specialists, for example professionals well versed with transcultural mental health and disability disciplines

Recommendations:

Professionals need to be equipped with interdisciplinary awareness, knowledge and skills in the course of their training, especially when working with interpreters
Interdisciplinary exposure and training needs to be part of continuing professional development
Researchers need to explore how disability interacts with other diverse sectors and disciplines

The interaction between services provided by the Commonwealth, State and Local governments, including:

6.1 Health and mental health.

Persons living with autism that have interacted with EDAC have reported that at some point in their lives, they had mental health problems such as depression, anxiety, paranoia and suicidal tendencies. These mental health symptoms, however, were not detected and addressed in a timely and effective way. In many cases the professions that were involved in detecting the problems such as teachers, social workers and nurses had inadequate expertise in mental health. Attention needs to be made to address the mental health concerns for people living with ASD, so that they are given access to the appropriate coping skills. Parents were also ill equipped to accurately identify and report mental health cues in their children. The diverse Commonwealth, State and Local Government service providers need to be aware of the mental health dimension of disability.

Recommendations:

Professionals need to be equipped with interdisciplinary awareness, knowledge and skills in the course of their training
Inter-disciplinary exposure and training needs to be part of continuing professional development
Researchers need to explore how disability interacts with other diverse sectors and disciplines

6.2 Education.

EDAC has noted that segregation, exclusion, bullying and inappropriate sexual behaviour are some common complaints about school communities from families of clients living with autism. Children living with autism have difficulties expressing themselves verbally and relating with other children, in particular when the family speaks a language other than English. This makes it difficult to adequately respond to and resolve the social problems within the school. Consequently, many children with autism find special and mainstream schools intimidating and unaccommodating. Many parents and carers have opted for home schooling, but they find the option very costly and often unaffordable due to limited Government support.

Recommendations:

Eliminate barriers to inclusion and participation for children with autism in special and mainstream schools

Support home schooling as an appropriate alternative for children with autism that do not fit in mainstream and special schools
Review the funding criteria to accommodate home schooling
Provide adequate educational pathways and academic and professional recognition for home schoolers

6.3 Employment.

Inadequate educational opportunities lead to limited employment opportunities for persons living with autism. Limited participation in employment for people with autism leads to inadequate incomes and poor standards of living. There is need to increase access to employment as a key priority area in order to improve the economic security and wellbeing of CALD people with autism in Australia.

Recommendations:

Align educational and employment opportunities for children living with autism
Have an inventory of skills and aptitudes of children living with autism and develop mentorship scheme to develop these skills
Assist persons living with autism to develop business and entrepreneurship skills
Assist persons living with autism who cannot access formal employment to work from home

6.4 Justice

EDAC appreciates the Government’s commitment to human rights for everyone in Australia as demonstrated in the national action plan and the Australian Human Rights Framework. The human rights of children living with autism are protected in the National Framework for Protecting Australia’s Children 2009-2020 and overseen by the role of a National Children’s Commissioner established in 2013.

Realization of rights, however, is not an event but an ongoing process with ample room for improvement. It is therefore imperative that adequate resources be deployed in order to make the needed services be provided in a more equitable, inclusive, universal, accessible, and consumer-oriented manner.

Recommendations:

Empower CaLD parents of children with ASD to adequately execute their parental responsibilities instead of transferring that responsibility to the government.
Enhance efficiency and effectiveness of Children’s rights monitoring and reporting mechanisms

Address exclusion and discrimination of children with autism within mainstream society and its institutions.
Strengthen formal institutional oversight of human rights for children and children with autism in Australia.

6.5 Housing. Autism is a disability that has diverse social manifestations that have implications for housing arrangements. Some clients with autism presenting at EDAC have difficulties living in shared accommodation, due to their inability to understand the nature and requirements of sharing accommodation with other people. In such circumstances, individual housing may be appropriate even care and support needs to also be made available where needed. Such housing is in short supply and there is a long wait for accessible, safe housing.

Recommendation:

Make public housing more available and accessible for persons living with autism.
Consider making appropriate individual housing available for persons living with autism.

The social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people.

EDAC has identified the following social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people:

Significant mental health issues such as anxiety, depression and suicidal tendencies among persons living with autism
Dependency and inability to contribute to the economy even where potential is evidently available in the person living with autism
Impoverishment of parents and carers of persons living with autism

The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for people with autism, including:

Autism understanding within the NDIS. Under the Australia’s NDIS program, people living with autism are expected to meet with NDIS personal planners to discuss their goals and aspirations. The meeting is intended to turn these goals into specific objectives. Clients of EDAC have found these person-centred planning processes challenging because persons with autism have challenges in articulating

their goals, navigating social arrangements and prioritising their support needs.

Consequently, they are likely to experience dissatisfaction with the planning processes as well as the services they receive. The NDIS needs to be aware of the circumstances persons with autism live in and customize their processes and services accordingly.

The utility of the Early Childhood Early Intervention Pathway for children with autism. Clients have reported to EDAC that some early childhood educators are ill equipped to answering questions, advise on pathways and provide assistance to children who need inclusion support in services. Conversations with such educators are difficult, emotional, stressful and at times unhelpful, in particular when an accredited language interpreter has not been engaged.
The ability of the NDIS to support people with autism with complex needs, including those transitioning from prison settings.

As stated earlier, there is clearly a need for more service providers with a multidisciplinary professional preparation and expertise. An example that was given which is still relevant is service providers whose professional preparation includes mental health and disability knowledge and skills. The complexity of the needs of persons living with autism requires multidisciplinary orientation. The NDIS does not cover all the diverse professional needs of people with autism.

The adequacy and appropriateness of supports to empower people with autism to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services.

Most of the complaints from clients referred to EDAC have to do with need for assistance to access, and plan for NDIS support services. Some clients also report difficulties linking with relevant service providers and programs. Others report inadequate support for parents and carers. There appears to be a lack of cultural competence in responsiveness to client need.

The adequacy of funding for research into autism. As earlier stated, autism is a dynamic and complex condition which needs sustained research effort for enhanced understanding and intervention. There is limited Australian and international research into the impact that ASD has on people from CaLD backgrounds.

Therefor there is need for the Ccommonwealth Government as well as States and

Territories to invest into research projects that inquire into and compare the effectiveness of current evidence-based interventions. There is also a need to regularly analyse and interrogate data collected at service delivery points in order to make decision making evidence based.