More on the Advancing Supported Decision Making Project
Additional information from St Vincent de Paul Society
St Vincent de Paul Society NSW has valued the opportunity to explore Support for Decision Making (SfDM) practice within Ability Links Metro South Region. The project has achieved some significant outcomes including: people with disability and their supporters recognise and acknowledge the skills and abilities they have in decision making and the types of support needed; decisions have been made by people who have often had limited experience or power over decision making in their lives; people with disability and community members have received information about Support for Decision Making and people’s rights to make decisions; our staff have increased capacity to provide decision support to people with intellectual disability and/or cognitive impairment and/or their supporters; recruitment of a Peer Advisor and reference groups who could guide our project work and provide feedback to staff on SfDM work; and our organisation has developed skills and expertise in SfDM along with the development of an important partnership with Uniting Jaanimili.
Some of the challenges in delivering the project were based on the fact SfDM is a new and evolving field of work, and there were limited tools and resources readily available to support staff in their SfDM work initially. Another challenge was some people’s reluctance or inability to identify a supporter in their networks (family, friends, paid supporters etc.) who could support them in making decisions in a way they wanted the support.
The tools and resources developed by St Vincent de Paul Society through this project include: introductory information about SfDM for various stakeholders; ‘My Story So Far’ Easy Read template to gather information about people’s skills and experiences to date on decision making in their lives; tool to assist people think about the people in their life who they may approach for support; information for supporters; reflection tools for people with disability to track the development of their decision making journey; staff reflection tools; information sheets about SfDM and practice. Staff training and community education materials have also been developed.
Support for Decision Making is critical to ensure people with disability can explore their decision making skills and ultimately make the decisions that affect their lives with appropriate support from others.
Additional information from Uniting Jaanimili
Jaanimili had been trialling the Supported Decision Making (SDM) Pilot with our communities in the South Western Sydney, Western Sydney and Gunnedah regions in the early days of the project in 2014-15. We found that the concept of SDM suited our community in what we already do to support our families and participants. During the time Jaanimili was doing lots of trial and error and what was working and what was not; we were able to do a ‘hands on’ approach directly with participants/parents/carers and staff and found the more we did the more we could evolve and develop the concept to suit the communities which we were supporting.
There were so many findings! Confidence grew within the participant and the parents/carers; behaviours were being eliminated, children had a voice, parents/carers were thinking differently, there was lots of yarning and story telling this was helping us to get the word out and the learnings and understandings were coming.
During the initial phase Jaanimili had 2 SDM facilitators one for the Early Links age range of 0-8 and one for Ability Linkers in the 9-64 range. Across the board we found lots of anxieties with parents/carers in supporting their person living with disabilities to make decisions; this was only out of fear of the ‘unknown’, and with the support of the SDM facilitators the confidence grew in many parents and carers and they were able to support their person with the tools and ideas we had shared.
Jaanimili at this time did not develop any tools as we were on the ‘ground’ trialling and trialling lots of ideas and ways of interacting with community and working out how this would best suit the majority of communities.
Jaanimili is now in the second phase of the project supporting Illawarra Aboriginal Corporation and Nowra Aboriginal Medical Service Corporation to implement SDM into their practices with their own staff. We are also currently embedding the SDM concept into all of our Jaanimili programs across the South Western Sydney, Western Sydney and Nepean Blue Mountains regions with the Linker Teams and Birrung Gurung Case Management Intense Family Support Service.
We have developed a number of tools and these are ‘living documents’ that are evolving and changing with the needs of the staff and the community.
The biggest highlight is how crucial SDM is in the NDIS world; with all of our regions now in the NDIS, we are able to support families from the pre –planning stage through to the implementation of plans. This has allowed us to embed SDM into all stages and processes – best practice is developing.
The majority of our staff are well versed in the SDM concept and are using this daily with participants across all programs. We have done some training with staff but will be developing more intense training before the second phase finalises.
We fully support the concept of SDM and find it suits our community and our cultural ways in how our community works with kinship ties, etc; we have already a ‘circle of support’ known to us simply as ‘our community’, we use our family, friends, kinship and community ties to support us when needed – this is a strong key element for our families that we support knowing they are not alone and can build on their relationships to strengthen their own confidence to be inclusive.