Rather than starting with an interesting fact about me, I would like to start with acknowledging the amazing investigator team within the La Trobe University Summer Foundation Research Partnership working with me on this project: Dr Di Winkler, Dr Lee Cubis and Dr Sharyn McDonald.

Our team became in volved in MS research as part of our work supporting people with acquired neurological disability. We recognised that current funding systems are typically geared for people whose condition does not change over time. People with progressive neurological disorders, in this case MS, experience changing support needs as their condition fluctuates and progresses. Thus, we need systems that are responsive to a person’s changing support, health and housing needs. To help achieve this, we need a better understanding of the needs and preferences of people with MS across a range of areas including disability support, specialist disability housing and hospital discharge processes.

For someone like myself who has worked clinically with people with MS since the late 1970s, the most exciting development in MS research is the ongoing development of disease modifying therapies that have improved outcomes by reducing relapses and progression. For me too, the development of collaborative, multidisciplinary approaches to intervention and support have been and continue to be extremely important.

The National Disability Insurance Scheme (NDIS) represents an opportunity for people with MS to receive specialised disability housing and support that meets their needs and preferences. However, navigating the interfaces between hospital, housing and disability sectors is complex and time-consuming. This means that people with MS are at risk of lengthy hospitalisations and admission to Residential Aged Care (RAC) as the disease progresses. Unfortunately, limited evidence about the housing and support needs and preferences of people with MS is available. As a result, we know little about the ways in which, people with MS either successfully live in the community or move to specialised disability housing and support or residential aged care (RAC).The overarching aim of the project is to evaluate the ways that hospitals and the NDIS support people with MS to live a life that aligns with their needs and preferences.

We anticipate that our findings will inform interventions to improve outcomes for people with MS through three mechanisms: i) better understanding of NDIS timeframes and experiences are likely to facilitate faster and appropriate funding decisions, and reduce the risk of long hospitalisations and discharge to Aged Care; ii) a better understanding of the hospital discharge trajectory for people with MS will inform hospital interventions for timely discharge to appropriate housing; and iii) an enhanced understanding of the housing and support needs and preferences of people with MS will allow providers to design innovative housing and supports for this population, improving the likelihood of a successful transition to living in the community.

The most enjoyable part of our research is working together with people with neurological disability to ensure that current funding systems are responsive to a person’s changing support, health and housing needs. Responsivity to change is particularly important for people with progressive disorders as in the case of MS. Our biggest challenge is not only the lack of responsivity and efficiency within a funding system but also across funding systems, and so collaboration with people with lived experience and across sectors is particularly important.