National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 494
NDIS Bill Senate Submission
NDIS Future Generations Bill 2026
My name is Lisa Davidson-Lim I am 56 and I am a NDIS participant since 2022. I have hEDS Hypermobile Ehlers Danlos Syndrome which affects connective tissue throughout my whole body, affecting every system, and joints and muscles which then affect my mobility and cause significant pain daily. hEDS also has many co morbidities such as POTS that further enhance it’s daily variability. Sometimes I am wheelchair bound and other times able to walk around the home but need to continuously monitor my capacity.
I currently work part-time sporadically in my own natural health practice from home. My adult children also have this condition but are not part of NDIS. My husband had an extreme aortic dissection on 1/9/25 and is lucky to be alive but also should no longer be considered my home care as we are trying to keep him alive.
I have support workers 3-4 days a week and I am very careful about how I use my funding as I know it is the Australian publics money and not mine.
I do not support the bill in its current format and wish to note
I strongly oppose the Bill.
- The 50% cut to social and community funding is also economic participation.
I use this category to have support workers take me to the never ending medical appointments for hEDS I need to attend as I am mostly unable to drive but due to hypermobility in all my spine can not go in a random car with a random driver without significant harm to myself.
I also use this category to attend workshops and conferences related to my work. As most of these events are interstate. I only attend 1 a year and do remote / online where available. I would not be able to attend without a support worker to travel with and assist me during the workshops.
I also run workshops in the local community several times a year and need this to facilitate my continued capacity to work at all.
- I personally choose to self manage who works for me as a support worker as this is an important relationship that needs to be curated. These workers have certificates and ABN’s but should not need to be registered. All their invoices I see before they submit to my plan manager for payment. I also refuse to use services like Hire Up as they blatantly asked me to use funding from the wrong area to pay the fees they wanted. Mable also advertise way over the NDIS funding. Why is mostly unskilled labour being paid more than my son was working as an exercise physiologist ?
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 494
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If the Bill was successful the ministers new powers to cut funding without appeal, could cause serious harm to many families. There should always be someone overseeing the funding.
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While my disability is predominately functional, I grew up with my uncle who had rebella syndrome and was physically and mentally disabled. My grandmother looked after him 24/7 till the day she died and the toll that took on her without the NDIS is a place we should never re visit.
If everyone is to have a reassessment will anyone read the reports. A WHO FCA costs thousands of dollars and mine was redone in 2025 nothing was actioned in my plan review. So why pay to have it done.
- When I applied for NDIS I was able to provide 30 years of medical documentation on all the treatments and specialists I had seen and now see and that no matter what my genetic condition continues to decline. “ All appropriate treatments” is a statement of great concern. As all treatment comes without a guarantee and many treatments I had been offered over the years would have rendered me more disabled. So who is deciding this. hEDS does not have a cure or any listed treatments other than management of symptoms. That is also hard living in Hobart and I have been refused treatment by specialists. 1 saying “ you know we don’t like people with EDS” He accepted the referral and I was required to pay the fee despite his obvious pre conceived notion he would not help me. I have been trying to avoid a neck fusion since 2018 as 1 surgery would then lead to another and the public system would not provide the service and the private sector would want $50,000 out of pocket. All my earnings already go to pay for all my medical expenses not covered by the NDIS or Medicare or Private health. Medication, treatment and supplements out of pocket costs are over $3000 a month.
Now because of my husband’s medical condition my 90 year old father in law has generously paid off our home loan as inheritance in advance for us to survive.
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Automated decisions and algorithms with no individual appeal sounds like Robo debt on steroids. Have we not learnt that no 2 people with a condition are not 100% the same. We all have different needs, family structures and more people who are already impoverished from no fault of their own.
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Plan reviews I hear are what is costing the government so much money. But I had to submit a plan review in 2025 as my electric wheelchair battery had died and we were unable to get a replacement. My husband was in ICU and I was struggling emotionally and then told no I couldn’t use my funds to hire a wheelchair as I didn’t have the right budget for that. The participants do not write the plans. I was very
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 494
fortunate to get an urgent review and money for a new wheelchair and payment for my wheelchair hire. I truly appreciate having my wheelchair.
Now I have had to submit another plan review as the rules changed and the items I would normally buy from my consumables budget $2000 for items recommended by my OT or physio such as neck braces that need to be replaced every 3-4 months as they degrade., or any other brace for which ever part of my body requires additional support. Or a specialist keyboard to help me keep working are no longer claimable as they are not specifically listed in my plan. Again the participants do not write the plans. My OT who specialises in my condition has written so much about the supports I require. Access to the information is easily accessible to the NDIS. So I have budget areas that I am unable to utilise because of continuous changes to the NDIS without consideration of how this affects current plans. Yes changes are necessary but not at the human level of cost.
Fix the system not the participants!
No one asks to be disabled.
No one asks to beg for the right to be seen, heard and acknowledged as a human being with rights. We all deserve to be a worthwhile member of society.
Lisa Davidson-Lim
I am happy for my details to be public record.
Please vote against the Bill unless it is amended