- Homes that adapt to changing needs are essential.
- Accessibility and technology can support independence.
- Delays in funding can create significant challenges.
Identifying Housing Design and Support Needs for People living with MS
Living with MS can mean facing challenges that change over time. A home designed for accessibility, and flexibility of other support systems can help people live safely and independently. Despite the critical importance of this, there is limited research around addressing these needs in a practical way within the community.
A new MS Australia funded study followed the Knowledge-to-Action (KTA) framework, which helps turn research findings into real-world solutions.
The data used in this study was drawn from previous projects conducted by the research team, which focused on housing and support needs for people living with MS.
Data from these participants were collected from the following sources:
- An online platform called ‘Housing Hub’ which connects people living with disability with suitable housing.
- Hospital records of people requiring complex care.
- Interviews with disability support workers.
- A case study of a person with MS living in Specialist Accommodation.
The results of the above data review were presented to a reference group for discussion. Within this group were people with lived MS experience, family members, and MS professionals.
The findings from the previous research projects and input from the reference group contributions were combined to highlight key needs, barriers, and potential solutions.
Identified Housing Needs
Features like ramps, wider doorways, heating and cooling systems, and automated doors were reported by participants with MS as making a significant impact on doing everyday tasks.
A reliable and fast internet connection was important to allow access to health information online, working from home, and connecting with online communities.
Although homes can be modified to enhance accessibility and usability for people with MS, their suitability may change over time. If MS symptoms evolve, homes that were once suitable may no longer meet the person’s current needs.
This may result in people needing to move house to find somewhere more appropriate. Moving is a difficult task for many reasons, particularly when it involves leaving a familiar neighbourhood or support system.
Designing homes that can change with a person’s abilities could help more people remain in their home and community.
Other Support Needs and Challenges
The study found that people living with MS often need a combination of support, including caregivers, assistive technology, and changes to their homes. For some, this means more than 8 hours of care each day to help with tasks like eating, dressing, and moving around.
Unfortunately, the current funding system isn’t always able to meet these needs quickly.
This can leave people without the necessary care or equipment in times of functional or physical decline.
Participants reported frustrations with the NDIS, particularly long waiting times, with some waiting up to 160 days for plan updates. These delays left people in difficult situations while waiting for support.
Many also felt the NDIS didn’t address the unique needs of people with progressive conditions like MS, where symptoms can worsen unpredictably. The process often focused on current abilities, rather than planning for future challenges, resulting in inadequate support for the long-term.
Potential Solutions
Programs in other countries include alternative systems that respond faster to peoples changing care needs in these situations. For instance, in Wales, a program provides small home modifications within 15 days of being requested.
This is especially important in the event someone is hospitalised, meaning they could return home much faster.
While it doesn’t cover major renovations, improved response times could greatly benefit the MS community if this approach were adopted within Australia.
A faster, more flexible support system could ensure that people receive timely care and resources as their needs evolve, helping them maintain independence and quality of life.
What Does Independence Look Like?
The study found that independence meant different things to different people. For some, it was being able to live alone in a home that supports their needs. Others preferred shared housing with people who understand the challenges of living with a disability.
Assistive technology helped people stay independent. Tools like mobility aids and smart home devices made life easier. These new technologies may reduce the need for caregivers and help people live more comfortably and confidently.
The Path forward: Co-Designing Homes and Support to Meet Future Needs
Based on this study’s findings, the authors recommend:
- Designing homes that can adapt to future needs. For example, including features like level entrances, wider hallways, and spaces that can accommodate assistive devices.
- Providing flexible support services. People with MS sometimes face high caregiver turnover or undertrained staff, which can negatively impact their quality of care.
- Fixing delays in funding processes. A more responsive funding system could help people access the care and equipment they need without long waiting periods.
The researchers note the importance of including people living with MS, their families, researchers, doctors, and NDIA staff to develop solutions that will benefit the community, and work in the long term.
What is MS Australia doing?
These research findings strongly align with MS Australia’s ongoing advocacy for people living with MS accessing and receiving NDIS services. MS Australia has called on the NDIA to improve their awareness and understanding of people living with progressive generative, neurological and neuromuscular conditions such as MS and to implement more response and flexible planning processes. We have also called for improved housing and living supports that meet each participants individual needs and long and short-term goals and more timely access to home modifications and supported accommodation. We welcome the establishment of the NDIS Neurodegenerative, Palliative Care and Rare Diseases Advisory Group and the opportunity as a member to improve the NDIS journey  for people with MS.
