people on video call on laptop

What a start to 2020 it has been! The past few weeks have certainly been challenging in nearly every aspect of our lives. We, like you have been trying to keep ourselves updated with what we need to do and ensure we play our part in reducing the spread of coronavirus (COVID-19).

A few of our members have asked for specific information about what they need to be doing to protect themselves. We recently published a link to a good summary produced by Disability Services Consulting on our Facebook page. Most importantly, we encourage everyone to visit the Australian Department of Health website for guidance on what to do and for updates on the current situation. MND Australia have also published information and this can be found here.

The current best advice tells us to engage in social distancing, practice good hygiene and isolate from others if we’re unwell. Our staff are being supported to do this and are working with external support services to ensure they do the same. We are a small team but we are continuing to work hard to support everyone we can.

You will have seen several communications from us over the past weeks which reflect our responses to COVID-19. These include:

  • Our MND Advisors and Coordinators of Support will continue to provide services through telephone or video conferencing only. We’ve done this because we want to limit our impact on the people we visit. As community workers we have a high exposure to the general population and are mindful of the risk this poses to people living with MND.
  • Arranging for NDIS planning meetings to be conducted by phone OR for existing plans to be rolled over for another 6 months until the current situation eases OR for NDIS participants to authorise MND NSW staff to act on their behalf in planning meetings.
  • Ensuring our delivery partners for our FlexEquip service are following best practice in infection control. This means that we will continue to be able to supply and deliver the equipment people need. We are also in constant conversation with allied health professionals to ensure they’re also able to continue to support people with necessary equipment.
  • We’ve postponed or taken our education programs online for the next few months. They say ‘necessity is the mother of invention’ and the education and carers team have been pulling out all the stops to make sure we can continue to provide education and information to our members and their families. More on this below!
  • We are reminding all FlexEquip and NDIS participants that they need to update us on whether anyone in their home is unwell or has recently been overseas so we can update delivery drivers and in-home support services and put in place appropriate precautions. Most in home care providers have taken a very cautious approach to delivering their services and may need to make changes to staffing at short notice. We are doing our best to work through these issues as they arise and if there are unavoidable disruptions to your services over the coming months, we ask for your patience and understanding.

In a nutshell, it is business as ‘slightly’ unusual for us for now!

The current situation has presented us with an opportunity to revise our education and carer programs and to explore ways these can be delivered online, via telephone or video conferencing. We now have a package of resources that can be emailed to newly diagnosed people and their families. For anyone receiving the new online information package, there’s an option to arrange a telephone follow up appointment to ask questions about the information you’ve been sent and to be linked to further information. This approach has already been taken up by people and is a great opportunity got us to speak more in depth about issues that concern them specifically and look forward to your feedback.

To access this info head here then click the link that says MND NSW information for new participants. The course does cost $10 but anyone with MND or their family can access this information free by simply ringing 1800 777 175 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

And then there is our virtual Living Well with MND course that we’ll be offering online in the coming months. If you or your family are interested learning more and becoming confident about what it takes to live well with MND, then this course is for you. It will include lots of interesting videos many given by experts in the field on subjects we’re all interested in learning more about. To find out more contact our education and carers team by phoning  02 8877 0999 or 1800 777 175 or via our course registration email reg@This email address is being protected from spambots. You need JavaScript enabled to view it..

Over the coming weeks, we plan to release more webinars, telephone connections and other joint video opportunities as well as new online learning courses. When ready, these will be announced on our Facebook page, via our newsletter and by email. Of course, you can always ring our Info Line on 1800 777 175 to find out more about what resources are available to you and how you can access them. 

The most exciting news yet is that our Day of Hope and Remembrance event will still take place during MND Week in May, just not face to face. Keep watching our Facebook page and your inbox for details on how you can get involved. All I’m saying for now is that we’re pretty excited for how this event is shaping up. If we can’t come together as a community physically, then we’ll get together online but we’ll need your involvement to make this into something truly special.

Stay safe,


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