National Disability Insurance Scheme

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The idea of a National Disability Insurance Scheme (NDIS) was first introduced at the 2020 Summit held in Canberra in 2008. MND Australia immediately recognised the NDIS as a once in a lifetime opportunity to transform the lives of people living with motor neurone disease (MND). MND Australia has worked in partnership with its members, the six state MND Associations, to influence the establishment of a scheme that would ensure people living with MND receive the supports they need to maintain their independence, social inclusion and quality of life.

Influencing government policy is a long term commitment requiring determination, flexibility and patience. Over the last 10 years we have worked with a clear focus to ensure recognition of MND as a rapidly progressive, complex condition requiring a rapid and coordinated response from diagnosis onwards. From the outset we have advocated that all people with a diagnosis of MND should have early access to individualised needs based support no matter their age or postcode.

The NDIS started as a trial in July 2013 in four sites in NSW and Victoria. The MND Associations of NSW and Victoria were actively involved in these sites advocating for individuals, educating local NDIA staff and working to improve NDIA understanding of the progressive and terminal nature of MND within a model focused on capacity building. The national rollout commenced in June 2016 and all MND Associations are now involved in preparing individuals for their NDIS plans and advocating for plans that will meet their complex and progressing needs.

So are we there yet? Some NDIS participants living with MND have plans that are having positive, life-changing impacts on their lives; many others struggle with the planning process and development of plans to provide reasonable and necessary supports that take their progressing and complex needs into account. Our collective influencing must therefore continue.

If you or someone close to you is living with MND and experiencing issues with the NDIS you can share your story by emailing mndaction@mndaustralia.org.au 

Advocacy Timeline

August 2018 
MND Australia, NSW and Victoria met with NDIA. MND specific fact sheet for NDIA staff launched and MND Practice Guide updated and re distributed to planners. Discussed development of MND specific training modules for NDIA staff in partnership with MND Australia, NSW and Victoria. Confirmed that people with MND should be referred to planners not LACs for development of plans.   

July 2018 
MND Australia, NSW and Victoria met with NDIA CEO, Rob De Luca to discuss ongoing issues related planning process and the lack of understanding of MND from NDIA staff. Development of the NDIA pathway for people with chronic and complex conditions. 

June 2018 
Global Day, 21 June, provided the opportunity to meet with key decision makers. MND Australia, NSW and Victoria met with Assistant Minister for Social Services and Disability, Hon Jane Prentice MP and Senator Carol Brown to discuss the current experiences of people living with MND and the NDIS nationally.

August 2017
MND Australia, NSW and Victoria met with NDIA to discuss a range of issues and to support continued collaboration and communication. 

July 2017
Submission made to the Productivity Commission Position Paper National Disability Insurance (NDIS) Costs: Submission 13: Delivery of outcomes under the National Disability Strategy 2010-2020 to build inclusive and accessible communities
 
March 2017
Response to Productivity Commission Issues Paper – National Disability Insurance Scheme (NDIS) costs.

February 2017
The 10 member organisations of the Neurological Alliance Australia (NAA), including MND Australia, united to advocate for the needs and rights of more than 850,000 people living with neurological disease in Australia. A joint position paper was launched by NAA at Parliament House, Canberra to call for equitable and effective support within the NDIS for people with progressive neurodegenerative diseases and increased investment in research. By uniting with organisations that share similar goals, we are able to amplify our lobbying efforts and more effectively influence policy. We are stronger together.

January 2017
MND Australia, NSW and Victoria met with NDIA to finalise the development of the NDIA Practice Guide for People Diagnosed with MND. The guide was launched in March 2017 and was the first disease-specific Practice Guide to be adopted by the NDIA. The aim of the guide is to ensure that a person’s initial, or starter, plan contains sufficient supports until a specialised planning meeting takes place and a fully individualised plan is developed.

2016
The national roll out of the NDIS commenced in June 2016 and MND Australia, NSW and Victoria worked hard at every level throughout the year to advocate for those people living with MND entering the scheme

November 2016
MND Australia’s CEO Carol Birks and President David Ali met with Assistant Minister for Social Services and Disability, Hon Jane Prentice MP and Shadow Minister for Families and Social Services, Hon Jenny Macklin MP to discuss NDIS issues experienced by people living with MND. 

At the meeting with Assistant Minister for Disability Services we introduced the idea of the MND starter plan developed by MND Australia, NSW and Victoria to improve the planning process.

MND Australia, NSW and Victoria met with the National Disability Insurance Agency to discuss issues identified during the roll out period and the paper presented to Minister Prentice. 

In the lead up to the Federal Election MND Australia developed the MND Action Framework seeking five commitments from politicians to improve the lives of people living with MND and their families including improvements to aged and disability care and timely access to a full range of assistive technology.

July 2015
MND Australia submitted feedback on the National Disability Advocacy Framework Discussion Paper to the Australian Government Department of Social Services.

February 2015
Feedback from MND Australia on the NDIS Information, Linkages and Capacity Building Policy Framework 
Feedback from MND Australia on: NDIA – Towards solutions for assistive technology feedback on the discussion paper 

June 2014
On ALS/MND Global Day 2014, MND Australia and the state MND associations focused on advocating for Australians living with MND. 

Senator Sue Boyce, Alex Hawke MP, John Alexander MP, The Hon Catherine King MP and Gai Brodtmann MP joined representatives from peak bodies, people living with MND and their carers, the MND Australia Board and the Executive Management Group from the state MND associations at a morning tea held at Parliament House, Canberra.

Assistant Minister for Social Services, Senator The Hon Mitch Fifield visited the MND centre at Gladesville for a productive meeting about the issues related to providing care and support for people with MND. 

May 2014
MND Australia, NSW and Victoria met with NDIA to discuss experiences in the trial sites to highlight was is working well and what is not.
 
January 2014
National Disability Insurance Agency Draft Strategic Plan 2013–16 feedback

March 2013
Neurological Alliance Australia, STANDING COMMITTEE ON COMMUNITY AFFAIRS, Inquiry into the National Disability Insurance Scheme Bill 2012 – Public Hearing Canberra 5 March 2013. You can read the transcript here

MND Australia responds to the National Disability Insurance Scheme Draft Rules. 
 
MND Australia and MS Australia issue a joint response to the National Disability Insurance Scheme Rules Discussion Paper. 

February 2013
MND Australia attended NDIS Roundtable on interface with aged care with Ministers Macklin and Butler
 
Rod Harris, MND Victoria, Standing Committee on Community Affairs, Inquiry into the National Disability Insurance Scheme Bill 2012 - Public Hearing Melbourne 21 February. You can read the transcript here.

January 2013
Graham Opie, MND NSW, STANDING COMMITTEE ON COMMUNITY AFFAIRS, Inquiry into the National Disability Insurance Scheme Bill 2012 - Public Hearing Newcastle 21 February. Read transcript
 
Joint MND Australia and MS Australia Response to the National Disability Insurance Scheme Regulatory Impact Statement 2012
Neurological Alliance Australia: Response to the National Disability Insurance Scheme Regulatory Impact Statement 2012 
 MND Australia Response to the National Disability Insurance Scheme Bill 2012 
 Neurological Alliance Australia Response to the National Disability Insurance Scheme Bill 2012
 
October 2012
Response to the NDIS draft definitions – Eligibility and reasonable and necessary support 
 
May 2011
Response to Productivity Commissions Draft Report – Disability Care and Support 
 
April 2011

Productivity Commission Inquiry Draft Report – Disability Care and Support – public hearing