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The needs of people living with rapidly progressive neurological diseases, such as motor neurone disease (MND), cannot be met by existing or traditional aged care services or facilities. 

The introduction of a national disability insurance scheme (NDIS) has the potential to transform the lives of people living with MND who are diagnosed when aged 64 or younger. However it has been proposed that the needs of those people who acquire a disability after pension age would be best met by the aged care system.

The crucial issue is then how do people acquiring a disability over age 64 (pension age) access services based on need. MND Australia is working hard to ensure access to needs based care for all people diagnosed with MND no matter what age they are when diagnosed. In all NDIS and Aged Care submissions and discussions we will continue to highlight this issue.

Read the MND Australia Position Statement on Aged Care here

Read MND Australia submission to the National Disability Insurance Scheme Bill 2012 - submission 443 - and see what MND Australia has to say. 

NDIS POSITION STATEMENT

The introduction of a national disability insurance scheme (NDIS) has the potential to transform the lives of people living with motor neurone disease (MND). The proposed NDIS will go a long way in providing an appropriate support structure for people in need of urgent and complex support services following a diagnosis with a rapidly progressive neurodegenerative disease such as MND.

The proposed NDIS recognises the need for:

• early intervention for people with progressive degenerative disease
• an assessment process that can anticipate changing need
• effective protocols for timely and smooth referrals to and from the different sectors

The crucial issue that must be addressed is eligibility and access to services based on need not age.  It has been proposed by the Productivity Commission in their Disability Care and Support Inquiry Report dated 31 July 2011 that the needs of those people who acquire a disabiligy after the pension age would be best met by the aged care system.  This is not the case.  The needs of people living with rapidly progressive neurological diseases such as MND cannot be met by existing or traditional aged care services or facilities.

MND is not a disease related to ageing but many people are diagnosed when they are over the pension age. People diagnosed with MND aged over the pension age will need services from both disability and aged care systems to address changing and complex needs related to their disability and age to ensure their quality of life. A person diagnosed with MND aged 66 must be able to access the same level of service as those diagnosed aged 64 no matter which system funds the services. A rapid response to service provision from a range of services based on the needs of the individual not their age is imperative.

About 40% of people living with MND in Australia and currently registered with a MND Association were diagnosed when they were aged 65 or older.

MND Australia believes:

• A NDIS offers a solution to the chronic unmet needs for early intervention and lifetime care and support services
• People diagnosed with rapidly progressive neurological disease must be able to access disability services as soon as a need arises irrespective of where they live or their age
• MND associations will play a vital role within a NDIS with respect to specialist MND information and education and expert individualised and personalised support and services

MND Australia calls for:

• The provision of safety net flexibility for people diagnosed with MND and other rapidly progressive neurological diseases when they are over the pension age within the proposed NDIS legislation to ensure needs based care
• The MND community to support this scheme and to take action to spread the word in their community and to their government representatives
• Bipartisan government support and commitment to the introduction of the NDIS so that this significant social change can take place to benefit all
• Bipartisan agreement that a scheme such as the NDIS requires adequate and sustainable funding that is not dependant on a surplus from year to year.

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