In late 2022, the Federal Government announced a major review of Australia’s Disability Services Act, the legal rules that guide our services and support for people with disability, including those with Motor Neurone Disease (MND).1
The Act has been important for helping many people to access support and services for housing, employment opportunities, recreation and other activities as part of daily life.2,3 Yet, in its current form, the Act risks worsening the exclusion many people with disability still experience and fails to adequately meet their needs.4
The Act lacks a modern explanation of disability. There is a need for a sharper focus on a diverse community of people with disability. Guidance is not clear, either, for how to best provide disability support and services across in all areas of government.
MND Australia recently submitted a response to the government as part of its review for the Act.5 Here, we draw on our response to describe how important changes to Act are for making Australia more inclusive when living with MND – now, and for the long term.
We believe that proposed changes could help more people with MND, and others with disability, to choose the best services and support available, and to reduce the barriers that powerfully limit participation in Australian society.
The Disability Services Act (1986) is a law made by the Australian Parliament that seeks to make services and support available that enable greater participation in daily life for people with disability.1
Greater participation includes more independence, employment opportunities, access to accommodation support and recreation and similar activities to be part of the community.
The Act has standards that services are legally required to follow as part of their work. People with MND may access services like those for accommodation, respite care and employment and they need to achieve a certain level of quality, in accordance with standards.
The Act also contains guidance for government funding provided to services and best practice for research about disability.
There are several reasons why changes to the Act are needed.
Generally, the Act is long overdue for a review.4 Timely reviews of Australia’s laws for disability can help to make sure they remain relevant and engage with broader changes in the social, legal, economic, cultural, technological and physical conditions of life.
Limitations or issues with a law can be addressed. There may also be opportunities to expand or modify a law to better support people with disability.
While the Act focuses generally on people with disability, the focus needs to be changed. The focus has to shift from a medical understanding of disability as an “individual” experience, to one based on evidence that disability is created through barriers a person deals with in their community and in physical environment.6
Barriers can include the attitudes of other people, problems using computers and technology and a lack of government support for education.
People with disability are eligible for services and support from the federal government, states and territories according to the Act. Supports need to be coordinated and duplication avoided, however, and in a way that best meets the needs of people with disability.
Eligibility must also be clearer and better explained, including when there are problems for people trying to access support.
Critically, the Act requires a comprehensive and modern definition of disability. In line with the United Nations Convention on the Rights of Persons with Disabilities (CRPD)7 and recent evidence8,9 the definition is best to draw on a broad social definition of disability or “exhaustive” legal definition.
The definition should make it clear how a person meets the definition of disability and through a better explanation of various kinds of impairment, associated barriers to participation in daily life and what forms of support are likely to be necessary.
Many services for disability are provided across multiple areas of society. Services often, for example, work with people who are veterans and/or elderly.
Services working across multiple areas must follow the laws and guidance of more than one Act. The need to follow all laws can create confusion and make it challenging to regularly meet the relevant standards and requirements of the law. There may also be unnecessary duplication of work and an extra burden placed on services.
To help reduce the burden, the Act must better recognise where the quality of services is already being met through other laws and regulation, and the accreditation of services. The Act should also align itself better with other laws for quality and safeguarding of service provision.
It’s important that the Act is able to better address the current and emerging needs of people with disability through a broad and flexible range of services and support. Like the understanding of disability, needs change over time. Also, at the moment, the Act does not cover all disability services and support. Other legislation has the authority to fund and significantly impact some forms of disability services and support.
The Act will be improved by changes that provide it with much greater authority to deliver government services and support for people with disability.
MND Australia supports changes that have already been proposed by Government to the Disability Services Act as part of the review.
The proposed changes, generally, address many major problems. The changes include making the Act clearer and up-to-date with regards to its focus and definitions, more comprehensive in detail and grant more authority so that government can better fund and make available services and support to people with disability.
People with MND are likely to find it easier to access services and support for help at home, communication technology, enjoying recreation activities and the range of other things they need with changes to the Act.
The changes could also play an important role in creating more choices in daily life and being able to participate in the community like everyone else.
However, MND Australia has made a number of recommendations to the changes that would help them to better support people with MND, and others with disability more broadly.5
Our first recommendation is that the focus of the Act needs to be expanded. According to evidence, disability can occur from a range of life course experiences including diseases, such as neurodegenerative diseases like MND. The risk of MND increases steadily with age and the peak age of onset is during the fifties and sixties.
The focus must also include people who experience disability at any age, in addition to the attitudinal, environmental, institutional and communication barriers as per the social model of disability and the CRPD.
The second recommendation is for appropriate use of the Australian Disability Strategy across all layers of government as part of changes to reduce service duplication. Also, as part of improved coordination of services, people with MND should not be denied multiple supports due to age or the complexity of their needs.
Currently, the NDIS is capped at age 65 and older. The cap leaves a great number of people who acquire disability later in life like some of those with MND in a precarious situation, and often unable to access support and services in a timely manner. Thus, the new Disability Services Act must clearly articulate how the gaps will be filled and that these gaps must be filled in a timely manner.
Our third recommendation is to ensure the addition of an appropriate definition of disability.
The definition should include a clear acknowledgement of acquisition of disability at any point in a person’s life course and that the definition is broadly similar to (but using updated language) the Disability Discrimination Act 1992. The Act defines 'disability' as:
The definition also includes a disability that:
Finally, MND Australia recommended to the government that an important addition to supports and services is assistive technology. Assistive technology in all its forms and equipment should be covered by the new Act.
The government will announce the outcomes of feedback on the Act’s review by the second half of 2023. Afterwards, the process of developing a new Act will commence. The new Act would then need to be tabled in Parliament. The Act must then be passed by both houses of Parliament, and this process may take time.
Changes to the Act are, of course, only one way of improving the conditions of life for those with MND. There must be continued investment into MND research, including its potential treatments and what helps with care and support, here in Australia and across the world. MND is still a brutal, terrible disease with no cure.
Working towards changes to Australia’s laws remain necessary though for reducing the suffering associated with disability from MND and from a world that can too often be exclusive and alienating. A better Act is fundamental to helping more people with disability have the same kinds of choices as anyone else when managing daily life, to be part of their community, and to enjoy life as much as they can, now, and in the future.
We would love to hear from you about this story and changes to the Act. Email Ben at firstname.lastname@example.org