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Research Projects

Research and Development
 
 

Research Projects

Guddi Vision

The Guddi Project 2015-18

Background

Neurocognitive disability (NCD) is a complex condition. There is limited research in NCD amongst marginalised groups including Aboriginal and/or Torres Strait Islander populations. However, the incidence of NCD is thought to be high. People with NCD are over-represented in a range of human service sectors including housing and homelessness services and the criminal justice system. NCD is often unrecognized and poorly understood and there is a lack of culturally appropriate and safe assessment tools. The lack of appropriate identification of NCD is thought to result in negative psycho-social, educational and economic outcomes and costs for people across the life-span. 

 

The Guddi Partnership *

The Guddi Partnership began in Cairns at the Quigley Street Night Shelter, Anglicare North Queensland at the end of 2015. It is a partnership with researchers from Synapse, a peak disability organisation supporting Australians living with neurocognitive disabilities (NCD) and their families; the Specialist Disability Assessment and Outreach Service, Department of Communities, Child Safety and Disability (SDSAOT), a clinical team that provides services across Queensland to people with complex disabilities and their families, James Cook University, and Griffith University.

 

The Guddi Protocol *

The Guddi Protocol is a culturally safe screening protocol that has been developed in collaboration with Aboriginal and/or Torres Strait Islander people. The Guddi Protocol employs culturally safe methodologies to understand the person's experience of disability. Information is collected relating to demographic information, thinking skills (e.g., orientation; naming; verbal comprehension; verbal fluency; thinking; recall; executive function), depression, psychosis, post-traumatic stress disorder and the person's level of function over important life domains. The interview protocol includes several culturally validated scales. The culturally safe methodology surrounding the application of the Guddi Protocol enables Aboriginal and/or Torres Strait Islander people to engage with the assessment process. It enables greater understanding of the respondent's experience of disability and evidence of functional impairment and can assist with NDIS eligibility processes. It is designed to be used by local people and services and to build workforce capacity.**

 

So far

The Guddi Protocol has been implemented in a number of communities and services. Where Community wishes to work with the Guddi Partnership and use the Guddi Protocol stakeholders enter into an MOU to ensure the Protocol is implemented in ways acceptable, safe and appropriate for the Community. As part of the MOU we negotiate with users of Guddi to providede-identified datato Synapse to contribute to a National Data Repository. This data is only ever collected in de-identified form and with the informed consent of respondents. The repository will enable a more accurate picture of the extent and nature of complex disability in Aboriginal and/or Torres Strait Islander people to build an accurate evidence base to inform disability policy and reform.  

 

In some instances the Guddi Protocol is used as a routine assessment tool to assist services to identify and to respond effectively to people with complex NCD.  In other instances Communities have decided to use the Guddi Protocol to specifically facilitate access to the NDIS in the context of a Health Week. The Guddi Partnership is invited into Community to discuss how the Protocol will work best for people. Health Weeks are initiated, organised and run by Community. People attending Health Week can consent to a Guddi assessment and an on-site completion of an NDIS Access Request Form. Communities report that this 'one-stop shop' approach provides a safe and supportive environment for people with disability to be assessed for NDIS inclusion. 

    

Future directions

The Guddi Partnership wants to continue to work with Communities to understand the extent and nature of NCD amongst Aboriginal and/or Torres Strait Islander people, to share and support the application of the Guddi Protocol and information to support better outcomes for people with NCD, their families and communities. The Guddi Partnership is collaborating with a range of stakeholders to develop a suite of Guddis that have applicability across the life span and for specific cohorts, including young people and adults in the criminal justice system, and is working strategically, building new partnerships and informing policy decisions, where possible.

 

*The Guddi Partnership Project and the Guddi Protocol are subject to Copyright.

**The Guddi Project has ethics approval from Griffith University Human Research Ethics Committee.

 

Acknowledgement

The Partners who took part in the work of this article pay respect and acknowledge Aboriginal and/or Torres Strait Islander people who are the Traditional Custodians of the Land, and pay respect to Elders, past, present and future, and extend that respect to all Indigenous Australians. We thank those who participated in the research, and gave of their time and their stories. We also thank Traditional Owners, Elders, Cultural Advisors, and other respected community members who guided this research from the outset.

 

 

 

Contacts

Dr Clare Townsend
National Manager - Research, Evaluation and Development
ctownsend@synapse.org.au
07 3137 7400
0428 549 558

 

Cathy Paxton
Research Projects Manager
cpaxton@synapse.org.au
07 3137 7400
0499 244 711

 

 

 

 

 

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