Let's make the system fair for all people living with MND

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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.
 
Support the MND charterPeople 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.

 

NDIS vs Aged Care infographic

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.

  
Meet your local MPWe 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 will continue to advocate for access to the NDIS for all people with a diagnosis of MND no matter their age when diagnosed.
 
Until this is achieved 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:
    1. Introduce a formal ‘fast track’ process for automatic access to Level 4 Home Care Packages for people living with rapidly progressing and complex terminal conditions such as motor neurone disease to ensure early intervention and access to supports to meet rapidly progressing and changing needs
    2. 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
  2. Timely availability of assistive technology to meet needs of individual:
    1. Provide funds for assistive technology in addition to Home Care Package funding to ensure that older people diagnosed with MND living at home can access the assistive technology they need to maintain their independence, quality of life, communication and community access and to support carer health and well-being
    2. Aged Care sector to ensure equitable and cost effective access to assistive technology for people in residential aged care to support their independence, comfort, communication and quality of life.
  3. Improvements to the health/allied health/palliative and aged care interface:
    1. Good interfaces with allied sectors, particularly health and palliative care, must be developed to ensure a coordinated inter and multidisciplinary approach to care
  4. The development of National Guidelines for the management of people with rapidly progressive neurological conditions:
    1.  National Guidelines for MND, based on the UK NICE Guidelines - Motor neurone disease: assessment and management  to improve care from diagnosis through to end of life.

 

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:
 

Meet with your local memberArrange 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 Mitch FifieldWrite 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. 
 
 

Tell your storyTell 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: iwanttotellmystory@mnd.asn.au
 
 
 

Support the five rights MND charterSign 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.
 
 
 

networkDon'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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Phil Brady

Phil Brady considers himself one of the "lucky ones" as he has been living with MND for 20 years. In that time he has found  inadequacies in the Aged Care system like long waiting lists, provision of equipment and bureaucracy that defies logic. Read Phil's story