Global day for Motor Neurone Disease 21 June 2019
The Global day of recognition of ALS/MND is celebrated on the 21st of June every year. Motor Neurone Disease (MND) week was held in SA by MND Australia on May 5-11, 2019.
What is MND?
It is a terminal and rapidly progressive neurological condition affecting the nerves from the brain and spinal cord that control movement. In most cases, people with MND become unable to move, speak, swallow and eventually breathe.
The problem
People diagnosed with motor neurone disease (MND) aged 65 and over do not have access to the NDIS and are forced to rely on Aged Care services (which includes home care support).
The problem is that the waiting list for aged care services is long, with over 128,000 Australians currently listed. MND often progresses rapidly and some people die before they reach the top of the list, in addition, aged care services do not meet the complex and constantly changing disability needs of someone with MND. Many older Australians with MND are forced into financial hardships and must rely on family members to meet their complex disability needs.
This is why aged care needs to be fair and unbiased on age. The purpose of the MND week 2019 is to raise awareness among the society about the disease and how individuals and groups can contribute towards improvement of health care for MND.
The solution:
All Australians with MND deserve access to the support and care they need. Older Australians with MND should not receive an inferior level of care just because of their age.
To fix this, MND Australia are calling for the following improvements to make the Aged Care system fair by:
o Increasing funding for more high level home care packages
o Fast-tracking access to level 3 and 4 home care packages
o Including additional funding for assistive technology to improve the quality of life and independence for people with MND
What you can do as an individual:
Email your local member of parliament and ask them to take the pledge to Make Aged Care Fair for people with MND.
Join the MND Australia’s mndaction.org.au website to find out about how you can get involved to help create positive change for people living with MND in Australia
Find out more:
MND Australia – cost of MND
Contact the Motor Neurone Disease Association of SA (MND SA) for more information
