With a little bit of help, living with MND at home can be made easier, more comfortable and support greater independence.
Nurses, occupational therapists, cleaners, personal care assistants, social workers and other professionals and service providers can provide you with help to better deal with MND.
Finding the right help is important because most people living at home with MND will require assistance to continue to live independently. What assistance is required depends on the rate of MND progression, personal situations and type of physical weakness.
One thing that is common, is for people to initially feel reluctant having someone they don’t know come into their their home to assist them. Accepting assistance does allow you, however, to stay independent in your own home for longer, remain connected with your community and helps reduce the load on your carer.
You may also be able to access Australian government financial support for services provided at home.
How you access services can depend on your age and location so talking with your local MND association is a good place to start to learn about local services available to you.
Below is general information about some of the types of services available to people living at home with MND.
Domestic support is help for managing the daily tasks involved with keeping your home clean and tidy. You can access support for things like general house cleaning, washing and ironing clothes and grocery and other shopping.
Home maintenance involves caring for your home and garden so that they remain safe, enjoyable and are in an orderly condition. Examples of may include:
Home modifications support you to be able to mobilise and be cared for at home. The modifications for people with MND commonly include installation of:
Usually Occupational Therapists undertake assessments to determine what will work best in your situation.
Getting out and about is important and can become more difficult as physical ability decreases.
There are many types of community transport providers that provide transport for outings to shops, medical appointments and seeing friends and other social visits.
If your application is successful you will be sent a book of vouchers that you use when you use a taxi. To learn more click on 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, including:
Respite care can be understood as an organised, temporary break both for carers and the person they care for.
There are many professional services that provide respite care. Respite care can be organised in your own home, centre based in the community or in aged care home.
Some MND Associations provide funding for flexible respite options. Talk to your MND Advisor 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 is a great way 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 go out to shopping, social events or having someone, possibly a support worker, come to your home to spend time with you to assist you to spend time on your hobbies, passions and other activities of interest to you.
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 funded or partially funded through a Commonwealth Home Support Programme (CHSP), an Aged Care Home Care Package or the National Disability Insurance Scheme (NDIS). Some people totally self-fund their help at home through private organisations.
To access government funded supports at home, an application and assessment is required to determine both eligibility and need. You may need help from an MND Advisor to understand the options available, and how to best deal with government systems.