Lessons Learned: Why Advocacy Matters for MND

Published: September 2020

Carol Birks, CEO of MND Australia, has spent over 20 years working to improve the lives of people living with MND, with much of her work focused on advocacy. Carol recently reflected on what she's learned from working with key decision makers and the MND community, including how advocacy can best improve aged care for older people with MND, and why everyone must work together.

As the national voice for people living with MND, MND Australia works with the state MND Associations to influence national policy to improve the lives of all Australians living with MND, no matter their age or their postcode.

Influencing national policy, such as the introduction of the National Disability Insurance Scheme (NDIS), is a major focus of our work. It’s work that requires careful strategy and persistence. During my time at MND Australia, I’ve seen advocacy help create many positive changes for people living with MND. But I also know that so much more needs to be done.

With a long term, community driven and evidence-based approach, our advocacy aims to address some of the toughest challenges facing people living with MND. Better quality and more equal access to aged care services is essential. So too is better access to assistive technology, expert multidisciplinary health and community care and palliative care services.

Ongoing changes to the NDIS also mean that we must continue to advocate to ensure access to a NDIS that meets the needs of people living with MND.

Advocacy can make change possible. And help more people to live better with MND.

Establishing the NDIS – a great step forward

When the NDIS finally arrived, we saw it as a huge win for many people living with MND.

For over 10 years, we worked with our members, the six state MND Associations, and the MND community to influence the development of the NDIS to ensure it included people living with MND. Local, state and national engagement were key parts of that influencing work. Although there are still many issues with the scheme, overall, people living with MND who are diagnosed when aged under 65 are now receiving a wide range of fully funded services and supports to meet their needs through the NDIS.

Older Australians with a disability need equal care 

Unfortunately, the NDIS doesn’t cover people diagnosed with a disability aged 65 and over. Instead, older Australians with MND must rely on My Aged Care for Government funded disability support and services.

Over the last few years, we have witnessed an increasing and very worrying gap in access to services for people diagnosed with MND when aged 65 and over compared to younger people with MND.

Funding for the aged care sector has declined, recommendations from a raft of reports on aged care not implemented and state government funded disability services discontinued. This has had a profound impact on those people who acquire or are diagnosed with a disability when 65 and over who are forced to join a national queue to receive home based support from a system focused on the frail aged.

Since 2015, and following the passing of NDIS legislation that excluded people over the pension age from the NDIS, we have focused our community campaigns on advocating to Make Aged Care Fair. 

Any advocacy activity needs evidence to build a case for change. With our strong national network of state based MND Associations we set about gathering information and case studies from people living with MND, their families and carers and the health professionals and providers involved in their care.

Communication with the MND community confirmed that most people living with MND prefer to stay at home, and that their carers want to care for them at home, but they need funded, timely and needs based support to help them to do so. Time and time again case studies confirmed increasing challenges and frustrations in accessing aged care services to support home based care. And increasingly we heard that people living with MND were waiting over a year for a level 3 or 4 home care package with some dying before receiving any support.

Advocacy in action

Based on the evidence from the MND community, and supported by the Deloitte Access Economics Report we commissioned in 2015, a strong case for change to improve aged care was identified. The Deloitte Report was important for gathering data about the health and economic impacts of MND in Australia.

To best build on the evidence, advocacy campaigns must be multi–pronged, consistent and sustained. Therefore, using the evidence and report, we then developed a National Action Framework to guide our work addressing the need for change. The Framework outlined ways of implementing a range of strategies to effect change through key “asks” related to health, disability, aged care and research.

We also developed an aged care position statement. The statement outlined the key changes needed to improve the lives of people diagnosed with MND aged 65 and over to support our campaign and guide discussion.

Of course, developing plans and actioning the advice of the MND community required taking our asks to politicians. Accordingly, over the last five years, we have met with the Ministers for Aged Care, Shadow Ministers for Ageing and Health, advisors, the aged care department and key back benchers to seek and promote these changes. I believe these discussions were important in not only raising the awareness of decision makers of the need for change in aged care, but also in showing that the MND community is vocal and working together.

As well as our work advocating with politicians, we engaged the MND community through MND Week campaigns. The campaigns included calls for the community to get involved in emailing, writing to, or meeting with, their MP’s and senators. And we wrote submissions to inquiries related to aged care and media releases to inform and engage the media.

During this time many other groups, the federal opposition, independent MPs and families of people living in residential aged care were also campaigning for changes to be made to the aged care system. They highlighted the inadequacies of residential aged care and the increasing number of people waiting for Home Care Packages. In late 2018 the federal government established a Royal Commission into Aged Care Quality and Safety.

Challenges to effecting change

The announcement of the Royal Commission was a pivotal moment in advocating for change. The spotlight was well and truly on aged care. We of course made a submission which featured compelling and heart breaking case studies. The case studies showed just how much pain and suffering comes with not being able to access timely and good quality home care to support people living with MND and their carers.

The Commissions’ interim report, published in late 2019, confirmed the shocking state of neglect and urged widespread and immediate response. And then of course, the COVID 19 pandemic hit and sadly we continue to witness its devastating impact on people living in residential aged care, older people and those living with chronic conditions.

This impact starkly highlights the need to invest in home care support so that those who wish to remain at home are able to do so with community and family support. It also highlights the urgent need to invest in residential aged care to ensure that older people needing high level 24 hour care are well cared for with access to appropriately trained nurses and personal care staff with primary, allied and palliative health professional support.

The experiences of the last few months have also shone a light on the many dedicated and committed people involved in caring for older Australians who too often are under resourced and undervalued. There is now a groundswell of community support to change the future of aged care in this country.

Yet changing government policy can be challenging at times. Care for people with MND, as well as their carers and families, crosses a number of government sectors including; health, disability and aged care.

"There is now a groundswell of community support to change the future of aged care in this country."

Carol Birks, CEO MND Australia

Additionally, health care encompasses access to timely expert diagnosis, multidisciplinary clinics, assistive technology, community allied health, nursing and palliative care and crosses state and federal funding silos. This all makes MND advocacy particularly challenging with myriad government department to influence.

But, as happened with the introduction of Medicare and the NDIS, positive and monumental changes to improve our society and consequently the lives of people living with MND can and do happen.

We’re heading in the right direction, but we still have a way to go

It has been a unique and privileged experience working with the MND community over the last 20 years at local, state, national and international levels. I have learned that there is something about this community that draws people in and inspires and motivates them to keep working to improve the lives of those living with MND.

Perhaps it is the compassion and commitment that comes from knowing just how fast MND can progress, and that there is no cure. Or the courage it takes to live with MND and for families to work together when a loved one is stricken with such a devastating condition.

Whilst so many people in the MND community get involved and take action to effect change, the pace of change is frustratingly slow. Despite all the advocacy and research efforts over many years, unequal access to needs based care continues and effective treatments remain elusive.

But things are moving in the right direction. The pace of research has accelerated dramatically and we are now closer to finding effective treatments, at least for some forms of MND, than ever before.

People under 65 with MND can now access government funded support through the NDIS to help them live as well as possible. Most people have access to a specialist multidisciplinary MND Clinic and the increasing use of telehealth during the COVID- 19 pandemic has potential to improve access across Australia to these MND experts.

State MND Associations continue to further develop their services in response to the changing landscape offering support coordination, occupational therapists, assistive technology, information and education and their unique MND Advisor service to help people navigate our complex health, disability and aged care systems.

The national network of MND associations will continue to work together to advocate on behalf of the MND community. In particular we strive to influence improvements in:

• The NDIS
• Aged care
• Health care, to promote early diagnosis, coordinated multidisciplinary care and telehealth
• Access to assistive technology
• Palliative and end of life care 
• Access to genetic testing and counselling
• Government drug approval processes, should effective treatments become available
• Investment in research

With the spotlight on aged care, now is the time, more than ever, for us to work together to effect change. Decision makers need and want to hear from the people impacted. Making contact with your state and federal representatives to highlight what changes are needed to help you, or your loved one, live as well as possible with MND will strengthen our collective advocacy efforts.

Fundamental changes to aged care following the release of the final report from the Royal Commission early next year are very likely. Hopefully, they provide the opportunity for many more people with MND to find the help they need, and quickly.

But no matter what happens, the MND community must work together. Only together can we influence governments to make the changes needed to improve the lives of older Australians diagnosed with MND. Only together can we keep working towards a world without MND.