The Australian Government has so far committed $1 billion to support the first stage of a National Disability Insurance Scheme (NDIS). In July 2013 the first stage of a National Disability Insurance Scheme (NDIS) will become real for people with significant disabilities in a number of launch sites including; South Australia, Tasmania, the ACT, the Hunter in NSW and the Barwon area of Victoria. The funding in the Budget includes the establishment of a new National Disability Transition Agency to run the delivery of care and support to people with disability, their families and carers in the select locations.
People living with MND aged under 65 living in Barwon, Victoria, the ACT and the Hunter, NSW maybe involved in this first stage of the NDIS. MND NSW and Victoria are closely monitoring these launch sites and will attend relevant meetings.
Those people who acquire MND or a disability after pension age will not be eligible to access the NDIS under the current recommendations. About 40% to 50% of people currently living with MND were diagnosed when aged over 65.
MND Australia has recently made a Response to the NDIS draft definitions: Eligibility and reasonable and necessary support highlighting the need to improve the ageing-disability interface to ensure access to needs based services for people who acquire a disability when over the pension age. The MND Australia NDIS Position Statement calls for the provision of safety net flexibility for people diagnosed with MND and other rapidly progressive neurological diseases when they are over the pension age within the proposed NDIS legislation to ensure access to needs based care.
The Productivity Commission proposes that upon reaching the pension age a person with a disability could elect either to stay with the NDIS or move to the aged care system, but states that the needs of those who acquire a disability after the pension age would be best met by the aged care system. Separating these services isn’t the best approach. In fact, older people with progressive neurological diseases will need services from both systems to meet their care and support needs.
In the Productivity Commission’s Caring for Older Australians Inquiry, the Commission notes that the Australian Government has agreed to fund specialist disability services provided under the National Disability Agreement for people aged 65 years and over. Whether these and other improvements would be sufficient to meet the disability needs of older people diagnosed with MND is yet to be seen.
MND Australia will continue to urge governments to provide adequate access to planning options and services no matter which system they are funded by or how old a person is. A seamless coordinated response from aged, disability and health care services to ensure needs based care should be integral to the implementation of the recommendations of these Productivity Commission inquiries.
Read Dr Paul Brock's Press Club Speech where he talks about the positive impact of the proposed NDIS on the quality of life of people living with MND highlighting the over 65 issue here.
Visit Every Australian Counts, the National Disability and Carer Alliance and the Federal Government's NDIS website for regular updates and to find out more about the NDIS campaign and how to get involved.
The final report was released by Prime Minister Gillard, Ministers Macklin and Shorten and Parliamentary Secretary McLucas on 10 August 2011. MND Australia congratulates the Federal Government on supporting the Productivity Commission's vision.
The Federal Government will take the first steps to establish a National Disability Insurance Scheme (NDIS) as recommended by the Productivity Commission. A NDIS would transform the provision of support services to Australians with significant disability including people living with motor neurone disease. Click here for the report and more details.
MND Australia has actively contributed to the inquiry over the last 18 months making submissions and appearing at hearings. We thank all the people living with MND who have got involved to tell their community about the difference a NDIS would make to their lives - talking to the media, appearing on TV, sending the Call to Action letters, meeting politicians and joining the Every Australian Counts Campaign.
Mr Della Bosca, Every Australian Counts Campaign director, said the campaign acknowledged that much hard work lay ahead in finalising implementation and funding details.
“There is a long road ahead. Such a transformational change cannot be achieved overnight. But today the government took the first steps to ensuring people with a disability and their families will finally get the support they need to get on with their lives.
“People with a disability, their families and carers will now look forward to working with the government on the implementation and design of the national scheme to ensure it is the very best it can be and will meet their needs.”
Information about the Every Australian Counts campaign is available at
The Productivity Commission's Caring for Older Australians Inquiry Report was released on 8 August 2011. MND Australia made submissions to this inquiry highlighting that the crucial issue for people living with MND and their carers is access to planning options and services to address changing and complex needs to ensure their quality of life. A seamless coordinated response from aged, disability and health care services to ensure needs based care should be integral to reforms related to these systems. MND Australia has consistently called for needs based, not aged based, care and support for people living with MND.
In the report The Commission notes the agreement by the Council of Australian Governments that under the National Health and Hospital Network Agreement the Australian Government has agreed to funding specialist disability services provided under the National Disability Agreement for people aged 65 years and over (50 years and over for Indigenous Australians). It also notes that the Productivity Commission Report on Disability Care and Support is pending.
Key recommendations that have potential to improve outcome for people living with MND and their carers include:
Establish and Australian Seniors Gateway Agency to provide information, assessment of needs and entitlement to care and support services, care coordination and carer referral services
Replace current discrete care packages with a single system of integrated and flexible care provision to cover services including residential care, community care (domestic, personal, nursing), re-ablement, planned respite, home modification, palliative care, high level aids and equipment, and care coordination
More flexible respite arrangements to be trialled, such as cashing out respite entitlements and extending the range of approved informal respite providers.
Promote the expanded use of in-reach services to residential aged care facilities and the development of visiting multidisciplinary aged care health teams.
A person supported within the disability care system should be able to continue to be supported by the system best able to meet their care needs as they age.
Older people with disabilities can elect to stay with disability system or transfer to aged care system.
Ensure that residential and community care providers receive appropriate payments for delivering palliative and end-of-life care.
Governments should develop a coordinated and integrated national policy approach to providing home maintenance and modification services.
The Gateway, when assessing the care needs of older people, should also assess the capacity of informal carers to provide ongoing support.
From the Department of Families, Housing, Community Services and Indigenous Affairs website:
The National Disability Strategy outlines a 10-year national policy framework to guide government activity across six key outcome areas and to drive future reforms in mainstream and specialist disability service systems to improve outcomes for people with disability, their families and carers. It represents a commitment by all levels of government, industry and the community to a unified, national approach to policy and program development. This new approach will assist in addressing the challenges faced by people with disability, both now and into the future.
The Commonwealth, state, territory and local governments have developed the Strategy in partnership under the auspices of the Council of Australian Governments (COAG).
The Strategy is the result of a large nation-wide public consultation process, involving more than 2,500 people and was formally endorsed by COAG on 13 February 2011.
The Strategy sets out six priority areas for action to improve the lives of people with disabilities, their families and carers. These are:
Inclusive and accessible communities—the physical environment including public transport; parks, buildings and housing; digital information and communications technologies; civic life including social, sporting, recreational and cultural life.
Rights protection, justice and legislation—statutory protections such as anti-discrimination measures, complaints mechanisms, advocacy, the electoral and justice systems.
Economic security—jobs, business opportunities, financial independence, adequate income support for those not able to work, and housing.
Personal and community support—inclusion and participation in the community, person-centred care and support provided by specialist disability services and mainstream services; informal care and support.
Learning and skills—early childhood education and care, schools, further education, vocational education; transitions from education to employment; life-long learning.
Health and wellbeing—health services, health promotion and the interaction between health and disability systems; wellbeing and enjoyment of life.
The National Disability Strategy will guide public policy across governments and aims to bring about change in all mainstream services and programs as well as community infrastructure. It is the first time the Commonwealth, state and territory governments have agreed to such a wide ranging set of directions for disability