Motor neurone disease: support at home, when it matters
For people living with MND and the families beside them. Clear information, the questions people ask, what helps day to day, and how the NDIS, aged care and Kinship fit together.
- Registered NDIS provider (4-GWVHCEY)
- Same support worker every visit
- Free plain-English guide to download
What is motor neurone disease?
Motor neurone disease (MND) is the name for a group of diseases that affect motor neurones, the nerve cells that carry messages from the brain to the muscles. Those messages let us walk, talk, swallow and breathe. In MND, the motor neurones are damaged and die, and the muscles gradually weaken (MND Australia; healthdirect).
Early signs vary. Some people notice stumbling, trouble gripping, or slurred speech and swallowing changes. How fast MND progresses is different for each person. There’s no cure, and MND is life-limiting. MND Australia’s message is that coordinated care from a team of health professionals helps people live better for longer.
MND doesn’t affect sight, hearing, smell, taste or touch (healthdirect). Most of the time the cause isn’t known.
A note on words: we follow MND Australia and talk about “people living with MND”. Its motto is worth borrowing: until there’s a cure, there’s care.
Figures: AIHW, Motor neurone disease in Australia (2,800); MND Australia (diagnoses, age and lifetime risk). General information only, not medical advice. Talk to your GP or health team about your own situation.
The questions people search for
These are the questions Australians type into Google about MND, answered from the organisations that know it best.
How long do people live with MND?
It varies a lot. MND Australia gives an average life expectancy of 2 to 3 years from diagnosis, and healthdirect notes some people live a long time. Your neurologist is the best person to talk to about your own situation.
Is MND genetic?
Usually not. healthdirect says around 1 in 10 cases are inherited (familial MND), and MND Australia puts it at up to 15%. If MND runs in your family, a genetic counsellor can talk through testing.
What are the first symptoms of MND?
Often mild: stumbling from weak leg muscles, trouble holding objects, slurred speech or swallowing changes, cramps and twitching. They usually start on one side and spread (healthdirect).
Is MND the same as ALS?
ALS (amyotrophic lateral sclerosis) is one type of MND. The group also includes progressive muscular atrophy, progressive bulbar palsy, primary lateral sclerosis and Kennedy’s disease (healthdirect).
Is MND painful?
It can be. healthdirect lists cramps, pain and discomfort among the symptoms. Your MND clinic, GP and palliative care team can help manage them.
Can you get the NDIS for MND?
Yes, if you apply before 65. The NDIS has a priority pathway for people with MND, and MND Australia says to call the NDIS on 1800 800 110 and tell them you have MND. If you’re 65 or older, older Australians with MND get priority access to Support at Home through My Aged Care (NDIS).
What helps, day to day
Small, practical things that make a week easier. Take what fits and leave the rest.
Talk to your MND Association early
The MND Info Line, 1800 777 175, puts you through to your local MND Association. Calls are free and confidential.
A specialist MND clinic
MND clinics in most capital cities and major centres bring the health professionals together in one place (MND Australia).
Plan ahead, on your terms
Planning ahead, even early, can offer a sense of control and make sure your care wishes are known (MND Australia).
Equipment as things change
Mobility aids, communication devices and other equipment may be recommended (healthdirect). MND Associations can rent equipment, and the NDIS can fund it (MND Australia).
Support for the people who care
Carer Gateway: 1800 422 737. For emotional support after a diagnosis, healthdirect points to Medicare Mental Health: 1800 595 212.
How the NDIS can help
To be eligible for the NDIS you need to be younger than 65 when your application is received, an Australian citizen or permanent resident (or Protected Special Category visa holder) living in Australia, and have an impairment that’s likely to be permanent and substantially reduces your ability to do everyday things.
For MND, the timing matters. The NDIS has a priority pathway for people with MND. If you become a participant before you turn 65, you can stay on the NDIS after 65, unless you later move into aged care or start aged care support at home (NDIS; MND Australia). If you’re already 65 or older, contact My Aged Care on 1800 200 422.
A plan can fund support workers for help at home, personal care and getting out, plus supports that build skills. Start by calling 1800 800 110 or your local NDIS partner. The NDIS says it will decide within 90 days once it has your application and all your evidence.
The NDIS is changing
New NDIS laws passed in August 2026. From 1 October 2026, budgets for social and community participation and for daily living skills are being reduced as plans are reassessed or newly approved, and a new way of planning is due from April 2027. Check ndis.gov.au for the latest.
What’s changing (ndis.gov.au) →Support at home and in the community
We support people, not diagnoses. For someone living with MND, here’s where we can help.
Personal care and daily living
Showering, dressing, meals and the house, done the way you want them done.
Daily living support →PEG feeding and medication
PEG feeding, medication management and complex bowel care are on our registered high intensity list.
High intensity support →Community participation
Keeping up the things you love, for as long as you want to.
Community participation →Aged care is a different system
Our CHSP-funded aged care is domestic assistance only, in Northern Sydney and the Southern Highlands. We’re applying to deliver Support at Home but can’t take clients under it yet.
Home care: coming soon →Private nursing and help at home
Anyone can book privately while funding is sorted, or alongside it. Private nursing is from $120 an hour plus GST. Other services: call for a quote.
See private prices →The same face every visit
The same support worker comes every visit, so nobody has to explain themselves to a stranger each week. Families get updates as standard.
About Kinship →Kinship Uniting Services is a registered NDIS provider (4-GWVHCEY), operating in disability and aged care since 2017. We’re based in Colebee and support families across Western Sydney, from Blacktown, The Ponds and Marsden Park to Rouse Hill, Riverstone and Windsor.
Take it with you
The free MND guide is a printable PDF of this page, with a checklist and the numbers to call. Easy to share with family, your GP or your support coordinator.
Referring someone?
Support coordinators, plan managers, discharge planners and case managers: a short call is the fastest way to check whether we can help.
For referrers →Continence products and advice
If getting to the bathroom becomes harder as mobility changes, continence products can be part of staying comfortable at home. For independent advice, call the National Continence Helpline (1800 33 00 66).
Equipit sells continence products such as adult nappies and continence briefs. Equipit is the product-supply arm of Kinship Uniting Services, an NDIS registered and CHSP approved provider since 2017.
Disclosure: Equipit is part of the same family of businesses as Kinship, and Equipit itself is not NDIS registered. You’re free to buy from any supplier. Agency-managed NDIS funds can’t be spent with Equipit; if you’re self-managed or plan-managed, check with your plan manager first.
More free guides
Plain-English guides for the parts of the NDIS and caring that trip people up. Swipe to see them all.
How to apply for the NDIS
Eligibility, evidence and the application, step by step.
Read the guide →After you apply for the NDIS
What happens while you wait, and what to do with the decision.
Read the guide →Understanding your NDIS plan
Budgets, funding periods and how to read your plan.
Read the guide →Choosing an NDIS provider
Questions to ask, and how to check a provider’s registration.
Read the guide →Looking after yourself as a carer
Practical support for the people who are always there.
Read the guide →Questions families ask us
Can Kinship support someone with MND at home?
Yes, for NDIS participants and private bookings, and for CHSP domestic assistance in Northern Sydney and the Southern Highlands. Call 0437 733 744 and we’ll tell you plainly what we can staff.
Do your support workers do PEG feeding?
PEG feeding is on our registered high intensity list. We work from the feeding plan your health team sets.
What if the person is over 65?
If they became an NDIS participant before 65, they can stay on the NDIS, unless they move into aged care or start aged care support at home (NDIS). If not, aged care is the path through My Aged Care (1800 200 422). Our CHSP aged care is domestic assistance only, in Northern Sydney and the Southern Highlands, and we can’t take Support at Home clients yet.
Needs change fast. Can support change too?
Tell us as things change and we’ll adjust where we can staff it. We check in as we go and keep the family updated.
Can we book help privately while funding is sorted?
Yes. Private nursing is from $120 an hour plus GST. For other services, call for a quote. The final price is confirmed in writing before any booking.
Is this page medical advice?
No. It’s general information only. Talk to your neurologist, MND clinic or GP about your own situation.
Where this information comes from
- MND Australia: What is motor neurone disease?
- MND Australia: Newly diagnosed
- MND Australia: Government support and benefits (NDIS and My Aged Care)
- NDIS: Priority aged care support for Australians with MND (4 June 2026)
- NDIS: Guide to residential aged care (staying on the NDIS after 65)
- NDIS: Guide to leaving the NDIS
- healthdirect: Motor neurone disease (MND)
- AIHW: Motor neurone disease in Australia
- NDIS: How to check your eligibility
- NDIS: What are the NDIS disability requirements
- NDIS: How to apply
- NDIS: Securing the NDIS for future generations (new NDIS laws)
- NDIS: New way of planning
- My Aged Care (phone 1800 200 422)
- Continence Health Australia: National Continence Helpline
- Medicare Mental Health (national phone service 1800 595 212)
- Carer Gateway
The questions in “What people ask” reflect Google Australia search suggestions, checked 4 October 2026. Figures are quoted from the organisation named; check the source for the latest. General information only, not medical advice. Talk to your GP or health team about your own situation. Page reviewed October 2026.
Let’s talk about what you need
A short phone call is usually the easiest start. We’ll ask a few questions, tell you plainly whether we can help, and agree next steps together.
Registration 4-GWVHCEY. How to check any provider’s registration in two minutes.