The Australian Government has introduced reforms to Aged Care to give older people more choice, more control and better access to a wider range of aged care packages. The crucial issue is whether people with a disability over the pension age will have access to adequate supports to meet their individual needs.
Most people living with motor neurone disease (MND) have complex and individual care needs that rapidly snowball as the disease progresses. Their needs cannot be met by the current or traditional aged care system.
We ask the Government to make the system fair for all people living with MND.
The complex and escalating needs of people living with MND
For most people living with MND, the early symptoms – slurring of words, difficulty holding objects or stumbling – rapidly escalate to an unstoppable and life-limiting muscle weakness and wasting that robs them of their ability to move, eat, swallow and breathe.
People living with MND have complex and individual care needs that escalate as the disease progresses.
With an average life expectancy of just 2.5 years after diagnosis, all people living with MND need access to the right care, in the right place, at the right time.
End the inequity
There is inequity in Government support of people in Australia living with MND. For people diagnosed with MND when under the pension age of 65, the National Disability Insurance Scheme (NDIS) will, as it is introduced nationally, provide access to reasonable and necessary supports to meet their individual needs. However, people diagnosed with MND when over 65 must rely on aged care services and facilities, which are designed to address needs related to ageing not disability.
MND is not a disease related to ageing. People living with MND have complex and individual care needs that escalate as the disease progresses. These needs cannot be met by the current aged care system. People with MND have no time to waste; they need fast access to support and services to allow them to live better for longer.
To find out more about the inequity of care, click on the infographic on the right, or download it (best printed at A3-size or larger).
People diagnosed with MND need services and supports to meet their individual needs no matter what their age.
We call on Assistant Minister of Disability Services, The Hon Jane Prentice MP to advocate for the MND community by putting an end to the inequity. We ask that Aged Care Reforms make for a fair care system for people living with rapidly progressing neurological diseases like MND.
What do we want? A fair care system for all people living with MND
MND Australia calls for:
1. Improvements to the ageing-disability interface to ensure access to reasonable and necessary supports to meet the needs of people who acquire a disability when over the pension age. For example:
a. Aged Care make provisions to provide the full range of services
i. Introduce a rapidly progressive neurological disease supplement similar to the dementia/behaviour/veterans supplement to supplement both home care and residential care to meet complex and changing needs
ii. Extend the provision of aids and equipment to ensure that older people diagnosed with MND can access the aids and equipment they need to maintain their independence and community access
b. If Aged Care is unable to meet the disability needs of older people, the NDIS should develop a safety net model that provides for top up funding through the NDIS to address needs not met by Aged Care
c. Clear assessment processes and protocols for the interface between the NDIS and the aged care system
2. Improvements to the health/allied health/palliative and aged care interface:
a. Good interfaces with allied sectors, particularly health and palliative care, must be developed to ensure a coordinated inter and multidisciplinary approach to care
3. Timely availability of assistive technology:
a. Aged Care sector to ensure equitable and cost effective access to assistive technology for people at home and in residential aged care to support their independence and community access
4. The development of National Guidelines for the management of people with rapidly progressive neurological conditions:
a. to assist with establishing and maintaining interfaces between different sectors, to minimise duplication and to ensure timely and responsive access to reasonable and necessary supports to meet identified needs
Take action NOW
Join MND Australia and the State MND Associations to advocate for people living with MND. There are several ways that you can champion the rights of people diagnosed with MND when over the age of 65. Below are some suggestions, ordered from the most effective to least effective way to advocate:
Arrange a meeting with your local member
Your local member’s role is to represent your views in Parliament. Meeting your local member face-to-face is the best way to flag your concerns and to help shape the policies that affect people living with MND. Get the contact details of your local member
. Contact your State MND Association
to find out more about current advocacy campaigns and how you can help to promote positive change to the policies that affect people living with MND.
Write a letter to the Assistant Minister for Disability Services the Hon Jane Prentice MP
Taking the time to write a letter to the Hon Jane Prentice MP about your personal experiences of care and support services is an effective way to advocate for people living with MND. You may consider using our letter template
to get you started.
Tell your story
Do you have a story about care and support services that you’d like to share? Why not do like Phil Brady
and tell your story? We'd love to hear from you if you or a family member have received great care and support or if you see gaps that need to be filled. Email: email@example.com
Email the Assistant Minister for Disability Services the Hon Jane Prentice MP
In just two minutes you can use our email template
to send to the Hon Jane Prentice MP a message about the care of people diagnosed with MND when over 65.
Sign the MND Charter of rights of all people living with MND
Join over 2700 people who have signed to show their support of the five rights of people living with MND. Take three minutes to add your name
Don't forget to share the message
Download and print the fair care poster and pin it up where you work, learn and play. Encourage your friends, family and colleagues to support the advocacy campaign by sending them an email, and sharing the campaign on Facebook and Twitter:
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