On 17 November, promising developments were announced that could significantly elevate the engagement and support people with MS receive from the National Disability Insurance Scheme (NDIS). 

 The recent inquiry into NDIS operations recommended improving staff knowledge about invisible and episodic disabilities like MS — an outcome MS Australia has been advocating for to enhance fairness and effectiveness for those living with neurological conditions. 

 The announcement will come as a relief for many in the MS community who have grappled with persistent challenges while navigating the NDIS, primarily due to staff members not fully comprehending their condition. 

 This lack of understanding has often caused undue complications and stress for those either seeking entry into the Scheme or trying to sustain their support within it. The consequence has been insufficient or, in some cases, nonexistent support for those who desperately need it. 

 The Culture and Capability inquiry took place over 2022-23 to assess how the NDIS is implemented, performed, governed, administrated, and expended resources. It was overseen by the ‘Joint Standing Committee on the NDIS, ‘ comprising senators and MPs. 

 MS Australia provided a submission to the Committee with recommendations that align with our campaign, A Better NDIS for people living with MS, emphasising that the Scheme cannot offer solutions to what it doesn’t understand.  

Our submission centred on enhancing the internal operations of the National Disability Insurance Agency (NDIA), the governing body of the NDIS, with a focus on fostering better understanding and engagement with people with MS and other neurological conditions. 

The submission recommendations included the following: 

• Improved education and training on neurological conditions for NDIA staff 
• Establishing a resource library of disability materials that staff access as required 
• Compulsory disability awareness training for all staff 
• Hiring staff with lived experience of disability 
• Improved and clearer communication and decision-making processes 
• An NDIA neurological advisory group. 

MS Australia welcomes the recommendations in both the interim and final reports of the Committee and believes they align strongly with our recommendations, including: 

Recommendations to improve staff training and skills: 

• Disability awareness and anti-discrimination training
• Developing specialist skills in specific areas of disability and participants need

Recommendations to improve the way the NDIA manages invisible, episodic, rare, and psychosocial disabilities: 

• Improving staff knowledge and acceptance of these disabilities
• Recruit and retain staff with specialist knowledge and skills of these disabilities 

Recommendations to improve the quality and transparency of decision-making: 

• Decisions meet the requirements of the NDIS Act
• Staff training 
• Updated systems 

If implemented, these recommendations would greatly improve the way the NDIA works with participants, including people living with MS.  

 It would reduce the burden on participants to repeatedly tell their stories and ensure a more holistic, compassionate and person-centred approach to assessment and approval for NDIS services. 

 MS Australia also welcomes recommendations by the committee to ensure that people are assessed according to the totality of their disabilities and are no longer required to nominate a ‘primary disability’ and ‘secondary disability’.  

The majority of people living with MS experience at least one comorbidity and often require treatments for these comorbidities, so a move to a more holistic assessment of disability would be very welcome for the MS community. 

MS Australia will continue to monitor the outcomes of this review and how they are implemented by the NDIA. 

 Improving the operations of the NDIA is essential to improving outcomes for participants. We call on the government to ensure that the work undertaken by the Committee is not forgotten with the imminent release of the final report of the NDIS review.