Why We’re Fundraising: Bridging the Funding Gaps for MND Support

When Shane was diagnosed with Motor Neurone Disease (MND), it quickly became clear that the journey ahead would be both emotionally and financially challenging. While MND is a condition that requires significant care and specialised equipment, there are glaring funding and resource gaps for individuals who fall outside the eligibility criteria of the National Disability Insurance Scheme (NDIS).

The NDIS provides substantial support for those under 65 with progressive conditions like MND. However, for individuals over 65, like Shane, support comes through the aged care system. While well-intentioned, it is nowhere near sufficient for meeting the complex and rapidly changing needs of someone with MND.

The Funding and Resource Gaps

The aged care system focuses on basic care needs, with funding capped at levels that often don’t come close to covering the costs of disability-specific care. For example, Shane’s care and equipment needs far exceed what My Aged Care can provide in a single year, especially as the disease progresses.

Without the vital work of state organisation’s like MND Victoria, we would be left scrambling to cover these shortfalls alone. These organisation’s have been instrumental in providing support where government systems fall short.

My Aged Care Funding at the highest Level 4 package is about $62,000 per year, once approved unless you can get it fast tracked, it can be a 12 month wait before its actually available and then is built up over a year, its not available immediately. With the average lifespan of someone diagnosed with MND being 2-4 years, there is simply no time to wait.

NDIS is assessed based on individual needs – There is often in excess of $280,000 of funding approved depending on individual needs, which is available immediately and you do not have to wait for 12 months for it to build up.

How MND Victoria Has Helped Shane?

MND Victoria has stepped in to fill some of these critical gaps for us, providing:

  • An electric wheelchair to improve Shane’s mobility.
  • A hospital bed to ensure Shane is as comfortable as possible at home.
  • A small grant of $1,800 that has gone towards bathroom fixtures like a sensor tap and tiles.
  • Ongoing advice and emotional support that has been invaluable for navigating this journey.

This kind of support is crucial for families like ours, but it also underscores the disparity in resources available to those over 65 with MND compared to those who can access NDIS funding. For instance, the difference between the highest level in-home care package under aged care and an average NDIS package for someone living with MND is over $220,000 annually https://www.mndaustralia.org.au/getattachment/8bab80ec-cb43-4d67-9b64-90a3897066bb/MND-Australia-6-point-advocacy-plan-to-support-people-with-MND.pdf.

Why Fundraising Matters

Fundraising allows us to bridge these gaps and ensure Shane gets the care, equipment, and modifications he needs. Whether it’s raising funds for accessible home modifications like the bathroom or covering additional care services that My Aged Care can’t provide, every contribution makes a difference.

It’s also a way to support organisation’s like MND Victoria, who play a critical role in supporting people with MND. Their efforts rely heavily on donations, and every dollar helps them continue to provide life-changing services to families like ours.

How You Can Help

Here are the ways you can support Shane and others with MND:

Addressing the funding disparities between the NDIS and the aged care system is crucial for ensuring that all individuals with MND receive equitable support. By raising awareness and funds, we aim to bridge these gaps for the future and as well as provide Shane with the immediate and necessary resources to navigate this challenging journey.

Nic

Picture below is of Shane & Marlene, taken by Dean Phelps in December 2024. We organised a surprise vow renewal near where Shane proposed in Marysville beside the Lake.

www.deanphelps.com

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