by KIRSTY STEIN
PEOPLE diagnosed with degenerative diseases like motor neurone disease after age 65 will be disadvantaged under aged care reforms that come into effect in July.
The Motor Neurone Disease Association of Australia launched an email and letter writing campaign in MND Awareness Week in May urging Assistant Social Services Minister Mitch Fifield to support a fair care system.
Currently, people diagnosed with MND before they turn 65 can access the National Disability Insurance Scheme, which allows immediate access to funding and support, including any necessary equipment, with no co-payment.
However, the 50 per cent of people diagnosed after 65 must wait longer for packages, have access to only limited funding for equipment and face a co-payment.
About 1900 Australians currently have motor neurone disease, and most will survive about two years from their diagnosis.
“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,” national executive director Carol Birks wrote in a letter for supporters to send to the minister.
“Motor neurone disease is not a disease related to ageing – typically, people living with MND have complex and individual care needs that rapidly escalate as the disease progresses.”
In submissions advocating for change, the association has argued that the new restorative focus of programs, including the Commonwealth Home Support Program, was not suited to degenerative conditions that required rapid intervention and support.
The submissions argue that limited aged care package numbers mean people with MND who need urgent support and who can’t access home care packages, will fall through the cracks.
The Commonwealth Home Support Program has a $500 per person limit on funding for equipment.
“People with rapidly progressing neurological conditions such as MND should be considered to have special needs requiring specific services, and should be accepted automatically for access to support,” Ms Birks said.
The association has called for people with MND seeking aged care at home to have access to government-funded equipment packages for assistive technology to help them breathe, eat and speak, as well as case management and therapy.
Now that’s cool!
IT might have seemed like another social media time-waster, but last year’s viral ice bucket challenge has raised more than $1 million for motor neurone disease research.
Now, the MND Research Institute of Australia is thanking the more than 30,000 soggy Aussies who helped catapult the disease into the global spotlight and donated to advanced research.
The $1.05 million raised will fund clinicians and researchers from Australia’s leading motor neurone disease centres to work together, led by the University of Queensland’s Professor Naomi Wray and Macquarie University’s Associate Professor Ian Blair.
“Who would have thought that buckets of icy water would be such a powerful weapon,”
institute committee chairman Matthew Kiernan said.
“This collective goodwill has enabled the largest grant ever awarded by the institute, which will underpin future research and allow people living with the disease to benefit from advances made through genomic medicine.”
The expert team will comprise 16 researchers from nine centres across Australia, as well as international collaborators.
The news comes as former Essendon AFL player and Melbourne coach Neale Daniher’s Big Freeze at the G raised more than $2.3 million for the Cure for MND Foundation at the MCG on the Queen’s Birthday holiday.
Thousands donned blue beanies for the cause and marched to the gates of the famous stadium.
There is no effective treatment and no known cure for motor neurone disease, which directly affects about 2000 Australians who progressively lose the use of their limbs and the ability to speak, swallow and breathe.
