With a little bit of help, living with motor neurone disease at home can be made easier and more comfortable. It can also help you stay independent for longer.
Most people living at home with MND will need support to keep living independently.
The help you need depends on a number of factors. These include how fast your MND progresses, your personal situation, and the kind of physical weakness you experience.
Whatever your needs, getting help from nurses, occupational therapists, caregivers and cleaners can make life at home with MND easier.
Many people aren’t sure about having strangers come into their homes to help them. Help at home does have a number of benefits. Some of these are:
- allowing you to stay independent in your own home for longer
- keeping you connected with your community
- helping to reduce the load on your friends, family members and carers.
You may be able to access Australian Government financial support for services you get at home.
How you access services can depend on your age and location. Talk with your MND Association about local services available to you.
See below for more about the types of services available to people living at home with MND.
Domestic support is help for daily tasks involved with keeping your home clean and tidy.
You can access support for daily activities like:
- general house cleaning
- washing and ironing clothes
- food and other shopping.
Home maintenance involves caring for your home and garden to keep these spaces safe, tidy and enjoyable. Examples include:
- handyman services like minor repairs to gutters
- minor plumbing like fixing leaks or fitting washers
- gardening services like lawn mowing or general gardening maintenance.
Home modifications support you to stay mobile within your home. They also allow you to be cared for at home.
The modifications for people with MND commonly include installation of:
- ramps
- grab rails
- hoists
- wider doors
- height appropriate sinks
- roll in showers, and
- other changes to keep your home accessible and safe.
Usually an occupational therapist assesses what will work best for you.
To learn more about staying independent at home watch this short animation.
Getting out and about can become harder as your physical ability declines.
There are many types of community transport providers that take you to shops and medical appointments. They will also take you to see friends and other social visits.
State governments provide a Taxi Transport Subsidy Scheme. This scheme supports people with a disability who can’t use public transport. These schemes partly fund transport via taxi for eligible people. To sign up for the subsidy you need to:
- access an application form online
- take it to your doctor for them to complete and
- attach the form to your online application or mail the completed form.
If your application is successful you will be sent a book of vouchers or a smartcard. You can use these when you use a taxi. To learn more visit your state’s taxi subsidy scheme below:
Western Australia Taxi User Subsidy Scheme (TUSS)
New South Wales Taxi Transport Subsidy Scheme (TTSS)
ACT Taxi Subsidy Scheme (TSS)
Victoria Multi-Purpose Taxi Program
South Australian Transport Subsidy Scheme (SATSS)
Northern Territory Transport Subsidy Scheme (NTTSS)
Tasmania Transport Access Scheme
Personal care refers to someone coming to your home so they can help with your day-to-day personal care. Some examples are:
- support with showers and dressing
- help with meals
- help taking medication.
Respite care is a planned, short break for both caregivers and the person they look after.
A range of professional services offer respite care. Respite care can be in your own home, centre based in the community or in an aged care home.
Some MND Associations give funding for flexible respite options. Talk to your MND advisor or coordinator to see if this is available in your state or territory.
Sometimes, “emergency respite” is used if the carer suddenly can’t continue caring. An emergency respite plan helps to prepare for times when providing care isn’t possible.
Carer Gateway is the Australian Government's national approach to providing reliable services, supports and advice for carers. To find out about developing an emergency respite plan, or for more information about general respite, visit their website or call Carer Gateway on 1800 422 737 (Mon-Fri, 8am-5pm).
Social support includes assistance to access social activities within the community or in your home. This might include:
- shopping
- attending social events
- a support worker spending time with you so you can engage with your hobbies, passions and other activities or interests.
The Australian Government subsidises organisations to provide a range of services that support people to stay living independently at home.
How your assistance is funded depends on a lot of factors. Some assistance may be completely or partially funded through one or more of the following:
- a Commonwealth Home Support Programme (CHSP)
- an Aged Care Home Care Package
- the National Disability Insurance Scheme (NDIS).
Some people self-fund their help at home through private service providers.
You need to apply to access government-funded supports at home. After you’ve applied, your case will be assessed to decide both eligibility and need. You may need help from an MND advisor or coordinator to understand the options available. They can also help you deal with government systems.
Learn more about Australian Government funded care packages available:
- My Aged Care (for people aged 65 years and over)
- NDIS (for people under 65 years of age)
MND Australia would like to thank Kate Bunyan, Social Worker for her assistance in reviewing this content.
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