Until there's a cure ... there's care

Man in wheelchair on deckThis MND Week (May 6-12) MND Australia is launching a campaign to raise awareness and call on the Government to make access to support services fair for ALL people diagnosed with rapidly progressing complex conditions such as motor neurone disease (MND) no matter their age or postcode.

People diagnosed with MND aged 65 or over are being forced to rely on unsuitable Aged Care services for their care and support needs, despite the fact they have the same needs as a person diagnosed under the age of 65.

MND is not age related - it is a rapidly progressing medical condition with complex care and support needs. It leaves individuals unable to move, speak, swallow and breathe - and yet an estimated 50 per cent of people living with MND in Australia are refused access to National Disability Insurance Scheme (NDIS) and are forced to rely on Aged Care services. Aged Care is not designed for people with progressive neurological conditions or the disabilities they create. The inequity of care and support services for those living with a disability aged 65 and over is leaving people struggling to get the help they need, often pushing them into financial hardship, residential care and reliance on family members for their care needs.

There is significant disparity in the level of care and support available between the NDIS and Aged Care, including that Aged Care is means tested and has a financial cap. Long waiting lists result in people dying before receiving the care and support they need. People with MND have to go through stressful and unnecessary assessments despite being rapidly progressive and their condition only getting worse.

CEO of MND Australia, Carol Birks said: “Unlike the NDIS, Aged Care packages are designed to help those with age related frailty and do not address the needs of someone living with a disability. People with MND must have access to early intervention, ongoing expert assessment, complex support coordination, palliative care, respite, aids and equipment – the range of services to meet their assessed needs. We call on the Government to ensure everyone living with MND has access to the right care, in the right place at the right time irrespective of where they live, their age or which sector funds the service.”

"I've been assessed and approved for Level 4 ... there's a huge difference between Level 2 and Level 4." MND Victoria client

Background Information

People living with MND who are diagnosed when under the pension age are entitled and funded to access reasonable and necessary supports to meet their individual needs from the NDIS as it rolls out nationally. Many people aged 64 or younger with MND are now receiving NDIS plans that are having a positive and life changing impact.

Currently people diagnosed with MND under the age of 65 and accessing the NDIS are able to continue receiving NDIS supports as they age. Those aged 65 years and over who are assessed as being ineligible for the NDIS at the time the NDIS begins rolling out in their region and who are an existing client of state-administered specialist disability services are eligible to receive ongoing disability support from the Commonwealth Continuity of Support (CoS) Programme.

Those diagnosed when aged 65 years and older who are not eligible for either CoS or the NDIS must seek disability supports funded by the aged care system.

NDIS

AGED CARE

Entitled

Need to be assessed as eligible

No $ limit

Highest subsidy amount limit for level 4 package  around $49,500 p.a

Will fund all reasonable and necessary supports related to their disability needs

Aimed at addressing needs related to ageing does not encompass disability needs

No co-payment

Means tested co-payment

Once a plan in place no waiting

Limited number of packages –  As at 30 September 2017, there were 101,508 people on the national prioritisation queue with 40.2% assigned an interim lower level package

Plan can be re-visited as required to increase supports

If needs change will need to be referred for assessment for a higher level package

Assistive technology – included in a person’s plan

In NSW and Victoria MND Association ‘bundles’ being funded

Assistive technology needs to be purchased from package funds, leaving little left for personal care

What is MND

Motor neurone disease (MND) is the name given to a group of diseases in which motor neurones progressively die. Motor neurones are nerve cells that control the movement of voluntary muscles, that is, muscles that are under conscious control. With no nerves to activate them, muscles gradually weaken and waste, taking away the person’s ability to move, speak, breathe and swallow.

MND is also known as Amyotrophic Lateral Sclerosis (ALS) and Lou Gehrig’s disease in other parts of the world

Key Facts about MND in Australia:

  • MND is a rapidly progressive, terminal neurological disease
  • There is no known cure and no effective treatment for MND - yet
  • Each day in Australia two people die from MND
  • Each day in Australia two people are diagnosed with MND
  • People with MND progressively lose the use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses usually remain intact
  • Average life expectancy is 2.5 years
  • More than 2,000 people have MND in Australia and thousands more families and carers live daily with the effects of MND

For more information about MND visit: mndaustralia.org

About:

Together with the State MND Associations MND Australia works as a network to promote best practice in MND care, and encourage and promote equitable state-based services to help people with MND and their carers live better.

Instructions:

If you would like to produce a story about MND or the disparity of care of people living with MND, please contact the spokespeople below. Check our Media hub for the latest news or read MND Background Information Fact Sheet, which provides a snapshot about MND.

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