National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 199

Caitlin Smithen’s NDIS submission on behalf of ME/CFS Facebook Support Page

This submission was typed and submitted by Kate McCormack, on behalf of Caitlin Smithen.

I am a 35-year-old mother of two children living in Brisbane. I was diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) two years ago after contracting COVID in 2021. I also have Pott’s disease, ADHD and Ehlers-Danlos syndrome. As a result of developing ME/CFS I was forced to stop working as a full-time social worker due to the extreme levels of fatigue, which has resulted in me becoming hospitalised and bed-bound on several occasions. As a member of the ME/CFS community there are several aspects of the proposed changes to the NDIS bill I have serious objections to. I am writing this submission on behalf of the many people within the 250,000+ Australian ME/CFS community who do not have the capacity to write a submission due to their severely depleted energy and cognitive functioning ability, which can make it extremely hard to navigate technology and communicate.

Leaving the house to access healthcare is near impossible for most if not all members of the ME/CFS community. Requiring us to undergo multiple assessments with multiple specialists, some of which can cost up to thousands of dollars of our own money which is difficult to afford when you are forced to stop working, only makes it harder for people with ME/CFS to access the support they need. It took me over a year and a half to gain access to the NDIS via an ongoing tribunal process despite an NDIS-funded occupational therapist reporting I was severely disabled and telling me they were “completely dumbfounded and shocked” that I was not granted immediate access after my initial assessment. This overwhelming period declined my capacity significantly and I know of dozens within the ME/CFS who were unable to pursue assessments or have been forced to give up on getting assessments because this condition makes it unbelievably difficult to continue to advocate for yourself when you can barely manage to get out of bed most days.

Since gaining access to the NDIS my life has been dramatically changed for the better. I’m able to go out with my family, be a better mother to my children and I can now explore the possibility of returning to work. However there is always an anxiety that the NDIS could pull the rug out from under me at any moment with the changes that this bill is proposing. My trust in the NDIS has been significantly diminished after having to fight for access and I have very little faith in the NDIS doing the right thing by those navigating access to the system due to the changes this bill is proposing. I am opposed to any changes whereby the NDIS can make it harder for people in similar situations to mine to be denied the life-changing support they need.

This bill does not take a “Whole of Person Approach” and does not account for people with multiple and interrelated disabilities, which could lead to inadequate support. I currently have three primary disabilities recognised by the NDIS, but with the changes this bill is proposing the NDIS may only allow one of my disabilities to be acknowledged and supported. If you just took into account one of my disabilities, e.g. Pott’s disease, I would not be eligible for the amount of in-home hours with my support workers who allow me to be able to live in my house with my husband and family while I continue to raise my two children the way I wish. This bill does not take into account how multiple conditions and disabilities affect a person, their life and loved ones. Most people with disabilities have co-morbidities and in my case these multiple life-altering conditions cannot be separated from the other, they all overlap and affect my life in various ways. This bill needs to recognise NDIS participants as entire people who want to live enriching lives and by choosing not to take multiple disabilities into account this bill will limit the ability for participants to live full and meaningful lives and receive the level of support they need to meet their full potential.

This bill also lacks a clear way to appeal or replace your Needs Assessment. Not being able to challenge a Needs Assessment is greatly concerning for a number of reasons. I had to spend a year challenging my access decision in court despite being recognised by an independent NDIS assessor as 83% disabled through the WHODAS assessment schedule and I know of a number of people within the ME/CFS community who have had to do the same. Removing that right would remove an ME/CFS person’s ability to get the support they so desperately need. This is further compounded by the fact the ME/CFS community do not have any representation on this level of consultation. I strongly recommend Emerge Australia be included in all future consultations regarding this bill and future changes to the NDIS as the official national patient organisation for people living with ME/CFS and Long COVID.