research

Optimising self-managed funding for people with a long-term disability: dialogue summary

Abstract

A day-long stakeholder dialogue was held on 5 March, 2015 to consider the factors which influence the uptake of self-managed funding by people with a long-term disability, and identify barriers and facilitators to the implementation and uptake of self-managed funding. Sixteen people participated. Discussions noted the following key considerations: The term ‘self-managed’ funding is more appropriate for people with long-term disability, particularly those who experience cognitive impairment. It should be assumed that all people with a long-term disability have the right to take up self-managed funding. Every person with a long-term disability has some capacity to self-manage their funding, and efforts should focus on building this capacity through education and training. Although people with a long-term disability may not want to take up self-managed funding the first time it is offered to them, every effort should be made to allow them ample time to consider it and opportunities provided to enable consumers and carers to ask for more information about what is required to participate. The approach to self-managed funding needs to be different for people with catastrophic injury compared with other conditions. Self-managed funding should be offered early for maximal uptake. To date, in the early implementation stages of current models, more people with spinal cord injury (SCI) than people with traumatic brain injury (TBI) have taken up self-managed funding; this is assumed to be a reflection of the additional complexities in the needs of people with TBI. To have greater success in the uptake of self-managed funding for people with a traumatic brain injury (TBI), there needs to be considerable thought about making the processes involved appropriate, particularly for those with cognitive and behavioural impairments. The capacity of people with a TBI to undertake the tasks associated with self-managed funding needs to be assessed by staff who have trained skills and also reasonable expectations of what can be accomplished. The relationship of the Carers and Family members with a person with a TBI needs to be supported through a range of offerings for self-managed funding. Funding agencies and service providers need to build trust and be willing to work collaboratively with people with long-term disabilities to ensure that they can consider self-managed funding as a means of empowerment and control. Encouraging and actively supporting people in peer support networks to talk to others about what the experience of self-managed funding is like and/or having consumer organisations conduct forums that present real-life experiences were considered next steps to increasing the uptake of self-managed funding

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