People with multiple sclerosis (MS) aged 18-85 are at risk of long hospitalisations and admission to Residential Aged Care (RAC) as the disease progresses. Due to the progressive and often unpredictable nature of MS, housing and support needs and preferences for this population differ from those with non-progressive disability. Despite this, little is currently known about how hospitals, disability funding bodies and housing providers can best support people with MS to live in appropriate housing and avoid admission to RAC.  Â
The proposed study will be the first to combine detailed data on the housing and support needs and preferences of people with MS, as well as provide valuable insights into the barriers, facilitators and opportunities for people with MS to live where and with whom they wish to live.  Â
This data will provide valuable insights into hospital processes, funding decisions and housing design, and how this may impact on people with MS; whether they are able to live in age-appropriate housing that meets their needs or are forced to live in inappropriate settings such as RAC or group homes.  Â
Extracting, integrating and interpreting this data will inform a co-designed intervention to improve housing and support outcomes for people with MS that will form the basis for a future grant application. This evidence base will also be used to build the capacity of allied health professionals and support coordinators, and influence policy. Â
Professor Jacinta Douglas and her team began the project by undertaking an in-depth review of previously published studies looking into the housing and support needs of people with MS. These reviews shed light on the importance of home design that supports independence, including features such as ramps, wider doorways and the need for assistive technology that helps with daily activities. Â
The team then looked at data that they had collected from people living with MS about their housing, support needs and preferences. This part of the study revealed that individuals with MS strongly prefer to stay in their own homes, but they can face challenges due to their specific housing and support needs. They require homes modified for easier access and the use of assistive technologies to deal with their symptoms and mobility issues. People wanted control over choosing and managing their support workers and highlighted the need for supportive relationships that are understanding and flexible. Despite these needs and preferences, people with MS encounter obstacles like limited access to suitable housing, financial issues affecting home modifications, and delays in support from the National Disability Insurance Agency (NDIA). These issues are intensified by the fast-changing nature of MS, which requires timely and adaptable support solutions.Â
To truly support the independence and quality of life of people with MS, this research highlights the need for a more informed, flexible and responsive approach from support providers and funding agencies.Â
The study sets a foundation for future research and policy development, aiming to bridge gaps in support and housing for people with MS, facilitating a pathway towards more independent and fulfilling lives within the community.Â
Three manuscripts relating to this work are currently in preparation for submission to peer-reviewed journals. Results will also be presented at an international conference later in the year.Â
Updated 31 March 2024
$25,000
2023
1 year
Past project