Support Coordination

MNDSA provides up to date information via several channels including, on our website, over the phone, shared on social media and printed resources.

We offer education sessions for clients and their carers, as well as Health and Community professionals, Workplaces and Schools to raise awareness about MND.

Our Support Coordinators are qualified health and community practitioners, working exclusively with people affected by MND.

They are a key point of contact and provide basic Counselling, Support and Service coordination for clients, their carers, and families.

At MNDSA, we have a team of qualified and specialised Occupational Therapists (OT) and Allied Health Assistants (AHA) who provide expert support to individuals living with MND to assist with maintaining independence, safety, and comfort throughout the MND journey. Occupational Therapists support individuals to adapt to their changing symptoms and enhance their quality of life.

The Occupational Therapy team complete comprehensive assessments and are guided by theoretical models that underpin their practice. This allows the OT team to provide tailored recommendations to help with managing activities of daily living (ADLs), and to maintain involvement with work, social, and/or leisure activities, focusing on whatever is most important to the individual.

This may include recommendations on home modifications to maximise function and mobility, specialised equipment to suit the individual’s needs, and/or alternate ways of completing activities to maximise participation. The allied health team can also provide recommendations and support with posture and positioning, fatigue management, and psychological, behavioural, and cognitive strategies. Ongoing assessments and reviews occur throughout the MND journey to provide continuity of care, and to ensure timely intervention as the disease progresses.

The Allied Health Assistants work under the guidance of the Occupational Therapy team to provide support with implementing therapy plans, trialling recommended equipment, and completing follow up education and training.

The Access Technology and Communication Service addresses the specific access and communication needs of individuals living with MND. Access refers to the way that individuals living with MND use their devices, technology, and other tools to enable communication and engagement with their digital world, even as physical capabilities change.

The service focuses on ensuring that individuals living with MND have appropriate access to devices to enable communication and connectedness to the digital world. This allows individuals to express their wants and needs, stay engaged with meaningful activities, and to maintain independent access to their technology.

MNDSA has an equipment service that is available to any individual living with MND. The broad range of specialised equipment includes but is not limited to:

• Electric adjustable beds
• Pressure care mattresses
• Transfer aids such as mobile hoists, electric stand lifters, gantry hoists, and slings
• Shower chairs, toilet seat raisers, and bedside commodes
• Mobile shower commodes
• Mobility aids such as 4-wheeled-walkers
• Manual wheelchairs
• Powered wheelchairs
• Pressure care cushions
• Electric adjustable recliner chairs
• Neck collars
• Access Technology and Communication devices (e.g. eye gaze, tablets, switches, alternate mouses)

Equipment is loaned to clients on a hire basis and must be assessed for and recommended by a suitably qualified allied health professional.

We provide Specialist Support, Allied Health and Therapy services to people living with MND who are aged over 65 and living in several country SA regions under the Commonwealth Home Support Programme (CHSP).

For people accessing or waiting for a Home Care Package, MNDSA staff can provide support coordination and access to our specialist services and personnel.

The role of the Aged Care Assessment Team is to provide information, advice, and guidance around suitable care options for people over 65 years.

Importantly, the Aged Care Assessment Team also facilitate access to community care packages (CACP/EACH), residential respite care and permanent placement in aged care facilities. These teams are based in the community and may be accessed throughout South Australia.

Carers SA provide information, services, and support directly to family Carers and the people they care for. Carers SA provides community education to assist Carers and their families, so they can provide the best possible support to loved ones. They support carers through the provision of information, education, training, advocacy, counselling, and other support services that may assist them in their caring role. They also raise awareness about the role of carers amongst the wider community. Services which may be of interest include the Carer Advisory Service, which provides information and referral and the National Carer Counselling Service.

Centrelink delivers a range of payments and services to the Australian public during times of change. Payments which may be of relevance to people with MND and/or their carer include:

• Disability Support Pension
• Carer Payment
• Carer Allowance
• Bereavement Allowance
• Low Income Health Care Card
• Pensioner Concession Card
• Mobility Allowance
• Essential Medical Equipment Payment
• Carer Gateway
• Department of Veteran’s Affairs
• My Aged Care
• National Disability Scheme (NDIS)
• SA Transport Subsidy Scheme (SATSS)
• Telstra Disability Equipment Program

MND support groups, offer a safe, welcoming space for people living with MND, their families, and carers to come together and share their stories. Whether you are newly diagnosed, navigating day-to-day changes, or caring for someone with MND, these groups provide an opportunity to meet others who understand what you are going through.

Support groups are available both in-person and online, to ensure accessibility for people across South Australia, including those in rural and regional areas. Some groups are tailored specifically for carers or for people who carry MND-related gene changes but do not have MND themselves.

Meeting regularly, our support groups are a place to connect, exchange practical advice, ask questions, and know that you are not alone.

To find out more or join a support group, contact your MND Support Coordinator or reach out via email or by calling (08) 8234 8448.

MNDSA’s Listening and Support program offers a gentle, confidential space to explore the emotional challenges that may come with an MND diagnosis, both now and into the future. Our trained volunteers are here to listen, provide emotional support, and help build personal resilience for clients, carers, and their wider support networks.

Support is available in a way that works for you, whether that is a face-to-face conversation, a phone call, or a video chat—especially important for those living outside the Adelaide metro area.

Ask your MND Support Coordinator for an introduction or contact our Volunteer Coordinator via email or call (08) 8234 8448.

Special Memories is a legacy-writing program that offers people with MND the opportunity to share and preserve their life stories in their own words. Sometimes called biography or life story writing, it is a deeply meaningful way to reflect, connect, and leave behind a powerful record of your life for family and future generations.

Whether you are capturing childhood memories, family milestones, or reflections on the road you have travelled, this process can be incredibly enriching—for both the storyteller and their loved ones.

To learn more about the Special Memories program, contact your MND Support Coordinator, via email or by calling (08) 8234 8448.

• Carers Kitchen Table Conversations for Male Carers – a monthly online opportunity for men who are in a caring role to give and gain support from peers. Run by MND Victoria
• Australian MND Group – A private Facebook group for people living with MND in Australia and their families.
• Let’s Talk MND – A public Facebook Group and Podcast hosted by MND Australia Ambassador Jane Simpson.
• MND Genies – A private Facebook Group for people in Australia and New Zealand who have an MND related genetic mutation.
• C9orf72 Support Group – A private Facebook Group for C9orf72 carriers, caregivers, friends/family, and anyone else who wants to know more about this gene mutation
• MND Carers Australia – A private Facebook Group to support the primary carer of anyone diagnosed with MND.