Community Informed Principles

‘Disability’ is a Western medical construct which often differs from Aboriginal people’s ways of knowing, being and doing in the Fitzroy Valley. Many Aboriginal people accept, celebrate and embrace an individual’s uniqueness and do not perceive disability as a deficit requiring a label.

Health and disability services will find it easier to talk about disability with people in the Fitzroy Valley if they understand the historical and current Aboriginal world view regarding disability. Reframe discussions with greater emphasis on how environments can support a person with a disability rather than on how that person needs to change/learn/develop. For example, when discussing Allied Health supports, such as speech therapy, clinicians should focus on how the family can incorporate strategies to promote language development rather than focusing on what a person cannot do. This difference in focus can be subtle and take time for health professionals to reframe the way they approach issues with family.

The NDIS assessment process requires a focus on what the child/person cannot do to meet criteria. As a starting point to build trusting and respectful relationships, recognising strengths and acknowledging the uniqueness of the person is essential.

Kinship represents the social glue in many Aboriginal communities and focuses on community strengths and the interconnectedness of families.

Health and Disability services should take time to understand how kinship systems function in communities.

• Ask about a person’s kinship. Map extended families and who plays a pivotal role in the child’s life.
  Take the time to learn where a person fits within their kinship system. This will help you to understand the person and their identity, what support they have available and what responsibilities/support they provide to their family.
• Enlist the help of Aboriginal staff to investigate how the kinship system could be integrated into disability supports.
• Recognise the informal care arrangements provided by families and advocate for respite care and other supports as needed.
• Upskill champions in Aboriginal communities to understand the NDIS processes and help navigate Disability Supports and Services.
• Build capacity of families to implement support plans identified through formal therapy sessions with health professionals.

Community members interviewed expressed a desire for Health and Disability services to place more emphasis on function than diagnostic labels and to provide individualised education to extended families about the best way to support the person with the disability.

Some participants felt that not recognising the functional needs associated with disabilities like FASD increased the risk of secondary disabilities (e.g. mental health and wellbeing) in later life. Access to diagnostic and functional capacity assessment services is crucial in determining what is best for the individual and their families.

The participants recognised that every child with a disability like FASD, displayed individual manifestations of their condition and that there was a need for better education and support for extended families to understand the persons individualised needs.

• Focus on a person’s capabilities and unique qualities and needs.
• Emphasise how family and support services can adapt environments to improve a person’s function.
• Connect with local mental health or allied health teams, supported by local Aboriginal Liaison Officers/community navigators. A ‘two way team’ model is preferred as it ensures that the process is guided by place-based cultural knowledge.
• Discuss a FASD diagnosis with sensitivity to avoid stigma by providing families with an alternative term for FASD that they can use, for example ‘brain-based disability’.
• Be conscious of the fact that in the Fitzroy Valley many people with a diagnosis of FASD, or suspected of having FASD, are living with their birth mother and remain connected to their extended families.

Participants recognised the need for more community-led or co-led education about neurodiverse conditions and other ‘invisible’ disabilities.

The Fitzroy Valley community recognises and continues to raise awareness about FASD and neurodiverse conditions and plays an important role in shaping and designing responsive services. MWRC along with collaborators continue to provide national leadership in this area.

Participants identified a need for more community-led education about other forms of disability, particularly ‘invisible disabilities' such as FASD, autism spectrum disorder, intellectual disability, acquired brain injury and psychosocial disabilities to build capacity of families and caregivers.

Increased access to education and support services helps families and communities to better understand a person’s diagnosis and condition and connects them to information about relevant disability supports such as the NDIS, therapeutic and educational supports, and the types of services available to people with disability, allied health therapies and respite care.

• Collaborate with Aboriginal people with lived experience of disability to develop community health education. Ensure training is responsive and tailored to each community.
• Create ‘two-way teams’ for non-Indigenous and local Aboriginal trainers to be informed by and responsive to local social and kinship protocols. Ensure language is understood and presented in accessible ways. This may include translations into traditional languages and Kriol.
• Use visuals and introduce new knowledge in an interactive and accessible way; the learning must happen both ways (in ‘two-way teaching’ the group teaches the trainers who in turn teach the group).
• Identify champions in each community and upskill them to support families to understand process and help navigate disability services. This helps empower local community members and builds capacity.
• Access training that builds capacity of service providers in emerging neuroscience and a broad range of neurodevelopmental disorders and combine with community information and understandings.
• Avoid providing information in an inaccessible form, such as pamphlets containing medicalised language that is not easily understood.
• Ensure delivery by the community and for the community rather than given to or done to the community.
• Create visual information using language, context and concepts co-created by community for maximum impact.

Community members spoke about the ongoing need to ensure that health services are accessible and culturally safe. Local community navigators with knowledge of the local language, families and communities as well as an understanding of the NDIS processes and other health services provide vital information.

• Take time to build trust and relationships by listening to and showing respect for community members' stories and lived experiences.
• Ensure reliability, consistency and commitment to building trust when interacting with the community.
• Deliver services according to communities' preferences, environments and ways of being. For example, provide support in a safe and familiar setting and ensure the appropriate process and permissions are followed before entering a community – best achieved through the community navigator leading community engagement.
• Be flexible and adapt the process and pace of information to work with the family, provide more time for rapport building and check for understanding.
• Explore more culturally appropriate assessments and supports, e.g., use examples of daily living activities relevant to remote Aboriginal communities and offer support alongside their everyday practices, like fishing or going out bush.