A snap shot of high quality research and research informed practice for people with intellectual disability in rural and remote Australia

Dr Kim Bulkeley1, Dr Monique Hines1, Ms Simone Dudley2, Ms Sue Cameron2, A/Prof Stuart Wark3, Prof Rafat Hussain3, Arne Müller1, Emeritus Professor Trevor Parmenter1, A/Prof Angela Dew4, A/Prof John Gilroy1, Professor Michelle Lincoln5, Dr Rebecca Barton1, Lee Ryall7, Heather Jensen8, Vicki Flood1, Kerry Taylor9, Kim McCrae8

1University of Sydney, Sydney, Australia, 2TherapyConnect, Australia, 3University of New England, Australia, 4Deakin University, Australia, 5University of Canberra, Australia, 6Centre for Disability Studies, Australia , 7NPY Women’s Council, Alice Springs, Australia, 8Centre for Remote Health, Alice Springs, Australia, 9Flinders University, Australia

 

Telepractice: A real choice for quality therapy services in rural areas
Kim Bulkeley,
Monique Hines, Simone Dudley, Sue Cameron

Background:
Despite growing evidence of the effectiveness of telepractice, allied health practitioners (AHPs) have been slow to embrace this model. AHPs express concerns about the suitability of telepractice as a service delivery model, such as the impact on therapeutic relationships, possible safety implications, the willingness of clients and families to engage, and the effectiveness of child management in sessions online. Such concerns may be further exacerbated for practitioners in the disability sector. There is limited evidence of utility with people with disabilities, including intellectual disability who require complex and multifaceted supports. It is also unclear if contemporary disability practice and principles can be applied via telepractice.

Method:
This presentation will focus on the qualitative in-depth interview data with seven participants from a mixed-methods, descriptive, multiple case study of telepractice services received by children with disabilities, including intellectual disability living in rural and remote Australia.

Results:
Telepractice was regarded highly by parents, therapists and the teacher.

Five themes emerged:

(a) the journey to acceptance of telepractice;
(b) consistency with person-centred practice;
(c) the relationship-based nature of telepractice;
(d) the role of technology as a vehicle for service delivery; and
(e) skilled AHPs.

Implications:
Our findings support telepractice as a legitimate service delivery model for disability therapy services. Perceived barriers around insufficient technology or proficiency with technology were successfully managed. Telepractice was found to incorporate contemporary disability practice, such as relationship-based, person-centred approaches employing collaborative coaching techniques that developed parents’ and teachers’ capacities to meet children’s learning and support needs.

 

Barriers and impediments to providing end-of-life care in rural Australia
Stuart Wark,
Rafat Hussain, Arne Muller, Trevor Parmenter

Background:
Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, limited knowledge is available regarding the barriers to accessing necessary end-of- life care support, particularly in rural locations in Australia.

Method:
Focus group interviews were undertaken with disability support workers from four rural locations in NSW and Queensland. A semi-structured interview guide was used, with a focus on gaining an understanding of the barriers and impediments to providing appropriate and timely end-of-life care for individuals with intellectual disability. All focus group data were independently transcribed, with thematic analysis then performed.

Results:
The thematic analysis identified eleven key thematic areas under three over-arching levels; Government, including community infrastructure failings and inaccessible generic health services access, Organisation, which included internal policy & practice restrictions and poor staff training, and Individual, such as religious beliefs, personal relationships and end-of-life expectations.

Implications:
It is already known that access to services is often poor for rural residents. However, these findings indicated that rural people with intellectual disability are further restricted in their ability to access generic and specialist services during their end-of-life. Exemplars including the lack of counselling support, and access to appropriate residential options. Improved access to end-of- life services is urgently required in rural areas, with a need to consider implementing innovative care models. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

 

Living a good life for Aboriginal people with intellectual/developmental disability from Central Australia
Angela Dew,
John Gilroy, Michelle Lincoln, Rebecca Barton, Lee Ryall, Heather Jensen, Vicki Flood, Kerry Taylor, Kim McCree

Background:
Disability rates among Aboriginal Australians are twice that of the non-Indigenous population but their service access is limited. Many Aboriginal people with disabilities living in remote areas are faced with the dilemma of having to leave their Country and family to access services. The relationship between connection to Country and health and wellbeing is widely recognised. This study aimed to understand what Anangu (Aboriginal people from remote Central Australia) with disability considered as ‘a good life’.

Method:
In-depth interviews and focus groups were held with 27 Anangu adults with a disability (11 with intellectual or developmental disability), 28 carers and 47 workers from 16 service provider organisations. Thematic analysis determined what a good life means to Anangu from geographically remote communities in the NPY Lands.

Results:
Essential to living a good life is connection to their Lands, being with family and engaging in cultural activities. Workers support for a good life involves ‘Proper Way’ help and an understanding of Anangu culture. Achieving a good life is difficult for many Anangu with intellectual/developmental disability and family members due to issues associated with geographic remoteness such as the lack of basic necessities and limited availability of services.

Implications:
Service providers and government agencies need to listen and work with Aboriginal people to understand how those with an intellectual/developmental disability want to live.  Enabling Anangu from the Central Australian region to live on their Lands with family requires a framework of culturally appropriate supports that respond to needs specified by Anangu rather than those proposed by service providers.


 

Biography:

Kim Bulkeley is an OT with over 25 years experience.  She completed her PhD investigating a family centred intervention for young children with autism. Kim’s research is grounded in her work with people with a disability, particularly to develop and evaluate allied health service delivery with remote communities.

Stuart Wark is the Year 2 Clinical Academic Coordinator in the School of Rural Medicine at University of New England. He has extensive prior experience in community and public health sectors in both rural and metropolitan settings. He currently teaches across the Joint Medical Program and supervises PhD students in the fields of intellectual disability, ageing and/or public health.

Angela Dew is an A/Prof, Disability and Inclusion at Deakin University. Angela is a sociologist with over 30 years working in the disability field in direct service, management, teaching and research roles. Angela’s main research interests relate to the lived experiences of people with a disability and their family members.