People over the age of 65 who develop a motor neurone disease (MND) can have difficulty accessing technology that provides greater quality of life and independence, because they are not eligible for the NDIS. In today’s piece, Carol Birks (@CEBirks), Ben O’Mara (@BenOMara), and Morag Millington, all of MND Australia (@MNDAustralia), outline the need and propose cost-effective solutions for providing assistive technology to older Australians with MND. This piece originally ran in The Mandarin.

The federal government is reported to be spending an extra $537m to address the sad and shocking state of the Aged Care system in Australia. This investment is an important initial step in trying to improve the lives of so many older people. But much more still needs to be done.

For older people living with motor neurone disease (MND) and others who are diagnosed with a disability when aged 65 years or older, finding appropriate care is incredibly challenging. There is no access to the National Disability Insurance Scheme (NDIS). The help available through the Aged Care system is designed for the frail-aged and struggles to effectively manage the physical and psychological symptoms of a cruel and rapid disease like MND. And, all too often, help tends to arrive too late.

Assistive technology plays a vital role in care and support for people with MND and other rapidly progressive disease. This includes electric wheelchairs, hoists, voice amplifiers, computer systems and other devices which can help to better manage MND as well as improve quality of life, carer safety and independence. Unfortunately, the technology is often expensive, and funding available through government schemes, including the Aged Care system, is hard to access and very limited with long waiting lists.

The average age for an MND diagnosis is 60 years. There are ways to make assistive technology available and cost-effective. Photo credit: Medical Xpress/public domain.

With Government looking at new ways of improving Aged Care, there is great potential for collaboration with the non-profit sector to make assistive technology easier to access, and in a way that is sustainable, and cost-effective.

By increasing access to assistive technology and enhancing the existing capacity and expertise of the national network of MND Associations, more older people could be assisted to improve the quality of their lives. Furthermore, pressure on the Aged Care system, already stretched well beyond its limits, may also be reduced.

Why it’s hard to manage MND and the use of assistive technology in Australian Aged Care

There are approximately 2,000 Australians living with MND. The average age of people with MND is around 60 years, and service data suggests that over 60% of all people with MND are diagnosed when aged 65 or older and therefore unable to access the NDIS. As a result, older people with MND have to turn to the Aged Care system to manage their disability needs.

MND damages the nerve cells that control the movement of voluntary muscles in the body, causing the cells to progressively weaken and die. With no nerve cells to activate muscles, the muscles of movement, speech, swallowing and breathing gradually waste away. Increasing disability and paralysis ensues and people, on average, will die within two to three years of diagnosis.

Existing or traditional aged care services are not designed to manage the symptoms of a complex condition like MND. Aged Care mostly addresses needs related to ageing, not diseases associated with disability.

Another major problem is that Aged Care is means tested and has a subsidy amount limit of $49,500 for home care packages. Assistive technology for MND can be expensive. A Deloitte Access Economics Report commissioned by MND Australia in 2015 found that equipment and technology comprise one of the highest per person costs for MND in Australia – $31,598. The cost of assistive technology, combined with the subsidy limit on home care packages, puts it out of reach of many older people with MND.

In addition, for those living in a residential aged care facility, access to the wide range of assistive technology people living with MND need is very problematic.

A lack of access to assistive technology makes it much harder for older people with MND to keep mobile, participate in work and recreational activities, and communicate with family, friends and others in their local community.

The benefits of a collaborative and cost-effective approach to assistive technology

The Royal Commission into Aged Care Quality and Safety estimates that it will cost around $2 – 2.5bn to clear the waiting list for home care packages. Current government spending in response to the report is mainly focused on home care packages, but many have noted that the current method of funding Aged Care is not sustainable. More financially viable approaches that also improve the quality of care are required.

Reducing the financial burden of assistive technology is a major challenge. However, with greater collaboration between the Aged Care system and the non-profit sector, there is the potential to increase access to assistive technology, and in a way that is cost effective.

Across all states and territories of Australia, state-based associations for MND offer a range of support services, including advice and information and education sessions. The State MND Associations have tried and tested assistive technology available for loan, at little or no direct cost to the person with MND.

The Deloitte Report also found that the cost of renting assistive technology through the state MND associations was considerably lower when compared with purchasing it through the NDIS.

A number of State MND Associations offer the option for people with MND accessing the NDIS to include an MND Association Assistive Technology Bundle in their plan. This enables people to access a suite of generic assistive technology items from the MND Association as soon a need arises. Alternatively, some of the State MND Associations offer a per item rental option which can be included in NDIS plans. Yet older Australians, who cannot access the NDIS, do not have these funding options.

MND Australia estimates that nationally there would be up to 450 people with MND aged 65 and older in need of an MND Association ‘equipment bundle’ at the current cost of $7,300 to $7,700per annum at any one time.

The equipment bundle represents a valuable opportunity, and if funded would help to:

ensure timely and equitable access to needs-based assistive technology for people living with MND and other rapidly degenerative diseases, no matter how old they are;

immediate provision of support for those waiting on home care packages;
facilitate mobility, communication and participation in everyday activities for those with a disability in residential aged care;
improve the links between Aged Care and existing expertise and assistive technology in the community over the long term; and critically,
minimise the increasing discrimination between those who are entitled to the NDIS and older people with the same condition.

Increasing access to assistive technology with a supplement award

The beauty of taking a collaborative approach to assistive technology is that there is an existing mechanism for funding the bundle – a supplement award in the Aged Care system. Supplement awards provide additional funding in recognition of the extra costs of caring for older people with cognitive impairment associated with dementia and other conditions.

Funding the equipment bundle through a supplement award would also contribute meaningfully to address the state of neglect of care for older people in Australia.

We can no longer wait to find better ways of helping older people with MND and others receiving Aged Care to address their disability needs in Australia. Fortunately, we already have useful options to improve access to assistive technology and other support that can improve quality of life, independence and community participation.

Now is the time to take action and end the discrimination. By working together, it is possible to create a more compassionate and sustainable approach to care through assistive technology provision for older people with MND and others who acquire a disability when aged 65 or older across Australia.

Acknowledgements: Information and evidence provided by the state MND associations across Australia was included in the writing of this article.

Meeting the technology needs of older Australians with MND: A cost-effective approach