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Dear Senate Committee, Senator Steele -John, and Senators ,

re: I DO NOT SUPPORT ANY CHANGES TO The AMENDMENTS OF THE NDIS BILL

I am writing to the senate committee and anyone else reading to urge you to prevent any changes or allow current and future government extensive power to do as they please.

It changes the current scheme into a full medico-legal model controlled by the government where people with disabilities are treated appallingly .

Unbeknownst to most the NDIA were already applying these proposed changes to those with list C disabilities back over a decade ago and at AAT .

I have very severe ME (Myalgicencephalomyelitis) which means I’m bed and housebound for most of the day it is a list C condition not just fatigue

I also have complex disability that severely impact each other ME+ Fibromyalgia (FM)+ POTS+ EDS (Ehlers Danlos Syndrome ) all list C conditions

I experience rolling PEM (post exertional malaise) and my disability is such that I have very limited energy envelope which significantly impacts my functional capacity (like a mobile phone unable to recharge and impacts its operating system)

You may be familiar with the Physics girl- her current video reflects my life for over 20 years https://youtu.be/xbcjf-hrOAs?si=n2ipgD9iA3D74-ob 🔹Undiagnosed 🔹 no support 🔹In bed 🔹rotting away 🔹isolated 🔹darkened room 🔹no sound 🔹 no media 🔹living off crackers

I am also a POC from a CALD background with no informal support and a carer . There is no representation of my cohort in my state , in the nation, or within NDIA .

I am also one of many millions forgotten and hidden away in our bedrooms

🔹For most of my disability I only had support from my GP, a few sessions of psych, and few sessions of physio dietitian or podiatry each year (substantially inadequate) I cannot return to this life of subsistence NDIA does not recognise there are inappropriate or no state disability supports

Home care was inadequate and insufficient - no longer exists

we cannot return to this inhumane void and war between state vs NDIA where NDIA does not recognise there are no state disability supports

all very experienced and exceptionally professional community care programs to help you get the state and

national support you need were removed by the state including knowledgeable help in getting on social services disappeared we cannot return to this NDIA does not recognise there are no state disability supports

I do not belong in aged care, I do not belong in residential care, I do not belong in just a 4x4 room, I belong

in my own home with my family and out in the community we must not return to this NDIA does not recognise there are no state supports

My entire life I’ve been poked, prodded, tested, assessed, gaslighted by ‘experts’ and told there was nothing

wrong, just general gender specific problems that will go away with age I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments

I was refused access many times since NDIS was rolled out even though o was supposed to be rolled over

to the scheme -many incorrect assumptions were made by my reviewer and technical advise team and the agency refused to contact my GP, my case expert , to seek further clarification I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I was not allowed the right to seek feedback, input, request, challenge or replace a inappropriate review

This medico legal adversarial procedural unfairness and war between the states and the agency cost me my

family, my informal supports, my informal carer, my relationships, my friendships, my job,my career, my education, my community, my wellbeing, my hopes, my dreams, and my future I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments ; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme

The NDIS required forms, assessments ,reports and evidence cost me hundreds of thousands of dollars and

my life savings I didn’t fit any criteria because nobody understanded my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I was not allowed the right to review provide feedback, input, request, challenge or replace a inappropriate review

each year I applied for Access 2 to 3 times and S100 2 to 3 times with new assessment reports - they still

didn’t get it right and I still didn’t have access I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I should have the right to review , provide feedback, input, request , challenge or replace a inappropriate assessments in conjunction

This equated to one useless report per each professional per each access and S100 .

Each professional cost $1500-2500 Each appointment cost up to $500 -$2500 I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme;

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I should have the right to review , provide feedback, input, request , challenge or replace a inappropriate assessments in conjunction with the expert professional who prepared even the best specialists, doctors, lac, community liaison, community access liaison, lac or NDIA representatives, all state and federal NDIS or non NDIS advocates , state and NDIA representatives, health professionals , could not understand my disabilities or get my submission right- because it was intentionally a secret nobody within WANDIS or NDIA were willing to divulge the reasons I was denied access or provide any information I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; My GP my supports and I should have the right to provide feedback, input, request , challenge or replace a inappropriate assessments Nobody understands ME ,POTS, FM, EDS and NDIS , my long time AHP (allied health professional) and medicos did not understand there are no experts in Australia I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme. I was told by many supposed NDIS experts who do not understand complex disabiloties to find another diagnosis before they would help write my NDIS report as nobody gained access for ME FM or POTS this is segregation ! I didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments There was no clarity by the agency as to what they were after even though they had provided it for other disabilities During my contact with the NDIA, reviewers , independent assessors , lawyers, Technical team , team leaders , managers, co-director they didn’t fully understand the complexity of ME FM & POTS I received comments like ‘crawling is acceptable ’ ’ if I have family I don’t need NDIA’ ‘I’m not disabled enough’ ‘we decide your disability’ ’we can ask for whatever records we want whenever we want ’ ‘FM is not a disability it’s treatable’ ‘pain is not part of ME’ ‘chronic fatigue or fatigue language’ ‘I hadn’t seen specific specialists’ when there are no specialists for ME , the long list continued over a decade I still didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme. In true medico legal fashion I was coerced into providing all my records and unnecessarily subjected to a independent assessment even though I already provided many new and recent functional reports which were all ignored. I still didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments ; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme!; My experts and I should have right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments when there were fresh existing assessments were ignored My privacy and safety was not protected when the NDIA and tribunal were specifically requested to ensure that processes and procedures were in place to ensure that it was at tribunal . This was not taken seriously. All my records were hacked and released on the dark web . The government should not be given sweeping powers and the agency , their staff, and any service providers internal and external need to ensure participant safety and privacy is given utmost priority . Severe penalties should be enforced . My personal safety and disability was not accommodated and I was goaded and forced to continue beyond my 20 minute limit of a 3hr assessment. I was in clear rapid physical and cognitive decline 20 minutes into my assessment . The lawyer and tribunal has ignored all my accomodation instructions sent by my advocate, the assessor refused to see me via telehealth I still didn’t fit any criteria because

• nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; my rights to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert was ignored

🔹during the independent assessment I was asked questions irrelevant to my disability, completed assessment irrelevant to my disability, and completed tests and administered questionnaires irrelevant to my disability they were all more akin to the elderly . I still didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; my rights to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert was ignored

🔹 My assessments heavily targeted my physical disability and alot of data was captured on the NDIA system but I was refused a copy of what had been captured I still didn’t fit any criteria because nobody understood my disability and there were no appropriateness assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert professional

🔹I was forced to answer inappropriate questions for my NDIS reports including at assessments, at AAT and independent assessments I was forced to answer culturally inappropriate questions I was forced to answer very private and personal questions I was forced to answer questions about my sex life , my culture , my dignity, and my human rights were not respected I should have the right to refuse without prejudice a inappropriate needs assessments 🔹I could not complete the entire independent assessment and after the assessment my function declined so significantly I went into very severe level of ME for 6 months . I feared for my safety and my life. It took me 9 months to claw my way back to pre assessment ‘baseline’ , yet the NDIA and assessor wanted to redo and complete their assesment I still didn’t fit any criteria because nobody understood my disability and there were no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I should have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert

🔹After more than a decade and lengthy AAT I was finally granted access and had my planning meeting but the plan didn’t not meet my needs despite over a decade of reports and extensive reports from AAT I depend heavily on everyday technology that other would not and the government must not be allowed to generate a generic script of allowed equipment and AT for all disabilities ! I still don’t fit any criteria because nobody understands my disability and there are no appropriate assessments; also the NDIA list C needs assessment method was already limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme;

🔹After more than a decade and AAT this is not enough. I now have to relive this and have a review and reassessment with NDIS staff every year or whenever it decides The government must not be allowed to have sweeping powers to reform the scheme as it likes without consulation and codesign as I still won’t fit any criteria because nobody understands my disability and there are no appropriate assessments, also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme;

-I am still severely disabled , I still belong on the scheme , but the government must not be allowed to decide which 1 of my disability ME POTS FM or EDS and related impairements is the more important and should only be supported I still won’t fit any criteria because nobody understands my disability and there are no appropriate assessments; also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I still won’t have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert

It took me over a decade to communicate bit by bit my complex disability and NDIS knowledge to all my formal supports and now they have all retired. Now everytime I have a new therapist or specialist The government must not be allowed to have god powers to do what they like. I don’t know how I’m going to cope with so little function and I need to keep doing what took me more than a decade to manage ; Plus I still don’t fit any criteria because nobody understands my disability and there are no appropriate assessments; also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I still won’t have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert

I fear I would be subjected to many more degrading assessments must fight against being subjected to many more future reassessments plan by plan or evey time the legislation changes , a animal would not be subjected this way because I still won’t fit any criteria as nobody understands my disability and there are no appropriate assessments; also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I still won’t have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert

it takes years to build knowledged within my team It’s took a lifetime for the world to understand ME POTS FM and EDS but I still won’t fit any criteria because nobody understands my disability and there are no appropriate assessments , also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme

I fear I will be kicked of the scheme after more than a decade fighting for access if the government is given sweeping powers because the NDIA lac, planners, TAT, team leads, managers, co-director , assistant CEO, CEO, and their external experts do not understand and there are no appropriate experts in Australia or assessments . I still won’t fit any criteria because nobody understands my disability and there are no appropriate assessments , also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme

After more than a decade I WAS STILL REFUSED ACCESS FOR MY OTHER DISABILITIES and related impairments. I was also blocked from obtaining any information surrounding my case and assessments I still don’t fit any criteria because nobody understands my disability and there are no appropriate assessments , also the NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY (S24b&C) requirements for entry to the Scheme; I still don’t have the right to review , provide feedback, input, request , challenge or replace a inappropriate needs assessments in conjunction with the expert

When I became severely disabled

I became heavily dependent on everyday items and technology . Items I purchased were refered by professionals . They were unaffordable back then , with improvements n technology and low production costs things like electric lift and recline bed, and electric lift and recline chair, air conditioning are now everyday household items but for anyone whose been disabled and on disability most of their life they’re not considered every day household items. My state is the worse for disability rebates compared to other states. The government must not be given sweeping powers to restrict disability related equipment .

Without being able to maintain ambient temperature I will be at I risk of falls and fractures.. I would not be able to reheat food in the microwave or airfryer as it will raise room temperature and my core body temperature . Without air conditioning o would not function. I would require a second freezer to stock more frozen ice packs, frozen fluids and electrolyte in my bedroom. I STILL WON’T

• I still won’t have the supports I need and be more isolated
• I still won’t have a wheelchair, AT, & home mods,
• I still won’t have transport
• I still won’t have access to family
• I still won’t have access to my culture and Community
• I still won’t be able to send my family to school
• I still won’t be able to work
• I still won’t be able to go out and spend time with my family
• I still won’t be able to have friendships
• I still won’t be able to have relationships
• I still won’t be able to study
• I still won’t be able to eat the food I love
• I still won’t be able to see my therapists and doctors in person when I need to
• I still won’t be able to dream about travelling again
• I still won’t be able to see my family overseas before they each pass away
• I still won’t have energy to fight the changes
• I still won’t have FREEDOM until I leave this earth in flight All my disabilities and impairments are impacted significantly by each other and need to be supported in my plan even if i still don’t fit any criteria because nobody understands my disability and there are no appropriate assessments , The NDIA list C needs assessment method is limited to considering needs that stem only from physical IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme; I don’t have the right to review, provide feedback, input, request, challenge or replace a inappropriate needs assessments in conjunction with the expert

IN SUMMARY

over a decade to get on the scheme I will be returned to a time before NDIS where there were inadequate or no state supports

over a decade to get on NDIA they will still fail to co-design with me or people with ME POTS FM and EDS Disability

over a decade to get on it is clear the NDIA still intends to determine which one of my many disabilities and impairments they will support and fund to EI or Disability criteria and physical impairments when if my ME POTS FM EDS and impairments impact significantly together and significant reduced function

Over a decade to get on the scheme I will still be reassessed ad-hoc without any rights or recourse

over a decade to get on NDIA I will still fail to be assessed and funded for ME FM POTS &EDS at a ‘WHOLE OF PERSON’ level

• 💠over a decade to get the scheme there will still be no needs assessment rights we will still be prevented

  • to request , review , provide feedback, input , challenge or replace a inappropriate assessments at any stage of the process from access to review, to internal review, to AAT

• 💠over a decade to get on the NDIA list C needs assessment method will still be limited to considering

  • needs that stem only from a PHYSICAL (not neurological or psychosocial ) IMPAIRMENTS that meet the EI or DISABILITY requirements for entry to the Scheme

• 💠Over a decade to get on the scheme and in a instant I can now be kicked off at any time as the NDIA

  • clearly intends to close off loopholes making the scheme medico legal and robbing us of all our human rights

• 💠Over a decade to gain access to the scheme I fear the over reaching government powers will kick me

  • off when I reach 65 into a ageist care system where participants are isolated and monitored in their own home and only allowed age related ’care ’ needs from a restricted inclusion and exclusion list , using unwanted registered instead of the free market , registered providers that previously harmed me , left me unsupported , and more vulnerable to prey

• 💠over a decade to get on the scheme if the legislation passes still won’t be able to use my funds to

  • support my ME or all my other disabilities and impairments

• 💠over a decade to get on the scheme it will take me an eternity to have my other disability and

  • impairments recognised as a disability and at cost to my current disability that only took me over a decade to get on the scheme

• 💠over a decade to get on they still have sweeping powers to supineoa a life time of personal files and

  • records without any safeguards or severe fines and penalties enforced

• 💠over a decade to get on there is no transparency by the agency it has been the most unsafe, distressing,

  • inhumane, denegrading, adversarial , letigous process I’ve ever been through to date where one does not even have rights to lawyer

After a lifetime the legislation will change the parliament will change and senate will change the people in it will change the scheme will change My disabilities and impairements will not change

I DO NOT SUPPORT ANY CHANGES TO The AMENDMENT OF THE NDIS BILL I urge you to prevent any changes or allow current and future government sweeping powers to do as they like.

Please excuse my less than polished submission, it’s informalness and mistakes are a reflection of my disability limitations .

Thankyou for your time reading my submission

Stand alone submission not to be merged with other submissions

Please de-identify before publishing due to being at risk and class action

Please don’t alter it is written with disability for the disability community to read as well

Shared Without prejudice