The needs of people with progressive neurological disorders are not being properly addressed by the National Disability Insurance Scheme (NDIS), according to a new publication.

The Neurological Alliance Australia has released a position paper making several recommendations aimed at improving NDIS outcomes for people with these disorders, reports Deidre Mackechnie, the Chair of the Alliance and CEO of MS Australia.

The paper warns that some NDIS participants are being placed at risk of avoidable hospitalisation.

Deidre Mackechnie writes:

The National Disability Insurance Scheme (NDIS) is set to transform the lives of people living with disability. But is the Scheme able to respond to the needs of people living with episodic and progressive conditions?

The Neurological Alliance Australia (NAA), ten national peak not-for-profit health organisations, met recently in Canberra with parliamentarians and their staff, people living with these conditions and advocacy groups to launch a joint position paper highlighting the issues relating to people with progressive neurodegenerative diseases in the NDIS.

The NAA can see that many NDIS plans have had positive, life-changing impacts, but many people, particularly those with progressive conditions, have experienced challenges in accessing the NDIS, including insufficient plans that will adversely affect their quality of life and place some at risk of avoidable hospitalisation.

There is a need to overcome these challenges if the NDIS is to fulfil the promise of having a positive impact on the lives of all people living with disability and their families and friends. We want to see changes for people with progressive and episodic conditions.

Improved pre-planning support is needed, as lack of pre-planning can lead to ineffective plans that will require an NDIS review and/or result in negative health impacts for people.

Funding for expert organisations to provide support to people with a complex conditions as they prepare for NDIS planning sessions, or for targeted NDIS education, would significantly reduce the risk of inappropriate or insufficient NDIS plans and the need for unscheduled plan reviews.

Planning sessions that recognise the unique needs of people with progressive or episodic conditions will offer true choice and control in individual plans. By gaining a better understanding of the diseases impacting clients and, wherever possible, meeting with these people face-to-face during the NDIS planning phase, will result in better plans and better outcomes.

People with progressive diseases are caught between a changing disability sector and aged care sector and there are limited options available to them within the marketplace.

Coordination of support mandated in all plans will ensure support and advocacy without which, many could fall through the cracks and be unable to access appropriate services.

Background

The NAA represents adults and children living with progressive neurological and neuromuscular diseases in Australia. Established in 2010, the Alliance promotes improved quality of life, coordinated services and greater research investment.

As health sector workers know, a health condition can impact both the patient and the important people in their lives. So the NAA, in supporting the 850,000 people directly affected by these conditions, is also there for their parents, partners, children, friends and workmates – an Alliance ultimately supporting and being supported by a total of more than five million Australians.

The impact of any chronic condition can undermine individual or family resilience, vital to their ability to remain purposeful, engaged in their community and in control of their lives; plus prevent financial burden.

Progressive neurological and neuromuscular diseases are both complex and disabling. While this broad group contains conditions with various characteristics, different disease trajectories and life expectancy, all are degenerative and incurable. This results in significant disability and the need for expert information, care and personal assistance.

Significantly, when the progressing and complex needs of these people have been overlooked due to lack of understanding of these diseases or for the sake of expediency (for example, conducting planning sessions over the phone), the outcomes have been overwhelmingly poor.

People with a progressive neurological disease run counter to the ‘traditional’ trajectory of most people on the NDIS as their care needs inevitably increase over time.

Consideration of their disease and anticipated progression is vital during planning meetings. NDIS plans need to balance independent goal setting with advance care planning; providing pre-planning education and support to assist them as they consider their future needs that go beyond the first year of their plan.

People with cognitive or communication issues require patience and understanding, limited distractions, clear speech, eye contact and non-verbal indicators; difficult to achieve over the phone.

Many of our consumers tell us their planning meetings have been conducted only with the person’s carer or without the participant present. So, the plan outcomes are less than optimal and the participant (and their supporter) is deprived of choice and control.

Wide-ranging benefits

The recommendations will not only improve NDIS plan outcomes for people with progressive neurological conditions but will also result in improved outcomes, including increased labour force participation of primary carers of people with disability; and social participation of people with disability.

The NAA remains an advocate of the NDIS, knowing that the roll out of this scheme is one of the greatest changes to care of Australians since the introduction of Medicare.

However, if people with a progressive neurological disease are to receive equitable and effective support within the NDIS, the NDIA and government must address these unmet needs.

The recommendations in the Position Paper will go a significant way to aligning the original intent of the NDIS with its practical application.

The NAA comprises Alzheimer’s Australia, Brain Injury Australia, Huntington’s Australia, Machado Joseph Disease Foundation, Motor Neurone Disease Australia, Multiple Sclerosis Australia, Muscular Dystrophy Australia, Muscular Dystrophy Foundation Australia, Parkinson’s Australia and Spinal Muscular Atrophy Australia.

• Deidre Mackechnie is the CEO of MS Australia, the national peak advocacy body for people living with MS in Australia and Chair of the Neurological Alliance Australia. Deidre commenced with MS Australia in early 2013 in the role of Executive Officer and Company Secretary before her appointment as CEO in 2015. In 2016 she also took on the role as Chair of the Neurological Alliance Australia.

Caption for feature image

L to R:

Graeme Shears – CEO, Epilepsy Australia;

Phil Martin – CEO, Muscular Dystrophy Foundation Australia;

Robyn Kapp – Executive Officer, Huntington’s NSW;

Carol Birks – CEO, MND Australia;

Julie Cini – CEO, Spinal Muscular Atrophy Australia;

Deidre Mackechnie, CEO MS Australia and Chair of the NAA;

Steve Sant – CEO Parkinson’s Australia;

Laurie Stroud – MD Ambassador, Muscular Dystrophy Australia;

Ara Caswell – CEO, Carers Australia; and

Nigel McPaul – Policy and Program Manager, Alzheimer’s Australia.