Submission 194

Commission Secretary Senate Standing Committee on Community Affairs P.O. Box 6100, Parliament House, Canberra Act Dear Commission Delegates,

Re- SUSTAINING NDIS FOR FUTURE GENERATIONS BILL 2026

My name is , a mature female who acquired disability at age 41.

I live in small community of about 700 people with providers required to travel an hour or more to provide me with daily care supports.

I am asking that the legislation as a whole does not pass, as it will move the scheme in the wrong direction for current and future generations. It is, in my opinion a discriminatory and biased document that is not what was promised to all Australians when the original NDIS Act was launched.

NDIS began in 2014 with the a promise to the Australian people. On behalf of the population, the NDIS Act promised to provide an insurance that people with disability would be supported to live a more normal life. They would be assisted to cover expenses beyond that which healthy and able bodied people needed to pay as an anti-discrimination policy within our society.

NDIS Act 2014 promised HOPE FOR THE FUTURE GENERATIONS, where disability was not to be bullied and kicked about, made a pawn, and people were not to be institutionalised and hidden from society as if to be a disgust and a burden.

• Family’s rejoiced at the hope they would not need to place young adult children into nursing homes, and they could see their children in safe homes living independently after they were dead.
• People with disability rejoiced and felt a huge weight burden taken from their shoulders, thinking the ndis funding relieves them and their family of poverty and shame or living a life half lived.

My disability is Myalgic Encephalomyelitis and was acquired in 2004. With the NDIS Act passing in 2014, I lived for the promise from 2014 to 2019 when the scheme rolled out in my postcode and I was accepted unchallenged.

I was incapacitated, bed-bound, and no family or friends to assist us and no community support open to me. My physical, emotional and financial situation was dire. Over the 15yrs of disability waiting for the chance to request access to NDIS, I was not able to shower, wash my hair, became malnourished and dehydrated resulting in delirium and hallucinations. Bedding was not changed for months, allowing the build up of dead skin and hair to provide an environment to support millions of silverfish that infested the mattress (I could feel them eating directly off my body and not have energy to protect myself). During these years I had no access to healthcare professionals and those who had been caring for me previously, admitted

Submission 194

defeat, saying they had nothing left to try. It was recommended I “go home and rest” with the under current being – to die.

It is possible my quality of live will revert to this low and unhealthy standard should this legislation be passed. And, I’m not alone, several thousand others with complex conditions and severe impairments face a FUTURE like I have experienced above and worse. Future generations partially funded or not having access to fundung will mean they are left INVISIBLE AND IGNORED bed-bound in filthy beds, malnourished with zombie lives all around the country. The social license of the scheme is not because participant are greedy, and new laws for the Quality and Safe Guards will see many bad actors out of the system saving millions without the participant paying the penalty for others unlawful acts.

In 2026 changes to the this promise are proposed and look like this- ➖ Limiting participants access to society, to health care and to basic needs. ➖ Removing valued workers (under registration) from the scheme where it’s more important to have experience and connection, than formalised studies forgotten as soon as the books are closed. ➖ Giving KING POWERS ie the govt minister ironically where their pay rate is determined by an independent body so as to avoid coercion, bias and over paying themselves. But, here we see, people with disabillty not being provide the same safeguards. ➖ Completely changing eligibility whereby for some participants the medical researchers and practitioners have no answers, no treatments, no cures, yet will be expected to try every treatment for numerous impairments which will be a never ending drain on the patient, on Medicare, on the health system, unless the patient dies first. ➖ Forcing treatment where a qualified medical practitioner has determined to be unsafe or unnecessary, and based on the individuals health, responses to treatment, ability to leave home and afford hundreds of thousands of dollars and decades of their lives pursuing an unreachable gold ring on the merry go round. ➖ Changing functional assessments to determine ndis needs where the assessment fails to be related to individual needs but instead fills a preconceived notion of what an able bodied person believes should suffice (scraps feed to the poor and pitiful) as supports. ➖ Removing human rights to a review on what is an even tougher test regarding functional capabilities that need ndis support for life.

➖ The SIMPLISTIC view of disability being applied under this Bill is unsafe. It a return to draconian thinking which implies that the disability community is to be treated as unworthy of sitting at the big people’s table, unworthy of being seen in the community, unworthy of living more normal lives and have not being given true co- design opportunities.

 ABELISTS are people or governments who hold a “belief” that favours non- disabled people over the disabled. Ie ableism is discrimination, prejudice, and social oppression directed against people with disabilities.

Submission 194

Ableism operates on the assumption that typical, “able-bodied” abilities are superior, often treating disabled individuals as inferior or viewing them as problems that need “fixing” or controlling.

Intentionally or not this Bill gives controls that reeks of ableism. Disabled people will be subjected to being labelled and boxed as a way to “control” them including loosing funds to access their own communities. It implies permanent impairments can be overcome and every barrier will be removed because the disabled need support to “learn how to be normal”.

Below I offer my personal story on each point above.

• Limiting access to friends/family, to health care, to basic needs.

With confidence of receiving social and community supports in my plan, I purchased a second hand accessible vehicle at our own expense ($85.000). As pensioners for many years this cost is not insignificant to my financial security. NDIS did not fund any modifications in this vehicle. Buying an accessible vehicle is not as simple as buying general purpose vehicles, they are scripted much as the powered wheelchair that is to be transported. This needs assessment by specialised occupational terapist which this new functional capacity assessment ignores.

I am not an isolated case. Many participants continue to fund very high cost disabillty equipment and AT for themselves, because ndis offers hope that “physical support” will be available.

➖ With the proposal to halve social and community access the purchase of this accessible vehicle has become a costly mistake by me. ➖ If this legislation passes I will need to sell the vehicle at a loss, and I will return to being housebound.

My disability isolates me from public and other transport, public and other buildings and highly populated spaces, as I cannot control temperature, chemical and fragrances, light and noise levels. Being in the community is high risk unless I have supports available.

➖ One trip using my own safe transport to see specialist dentist able to accommodate my disability needs uses 7 hrs of support funding. ➖ One trip using my own vehicle to the beach for a picnic (not swimming) uses 7hrs of support funding. ➖ Travelling to relatives (who comply with my disability needs) for a celebration, travelling in my own vehicle is 7hrs of support funding to enjoy reasonable time visiting (one does not travel two hours to stay 30mins).

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• community supports to replace NDIS funding - My disability denies me access to groups or community programs which the govt intends to fund as a “replacement support”.

• Iwillnotbenefitfromandinsteadwillbepenalised, ifthislegislationispassed.

• My disability does not neatly fit into the boxes others believes are how disabillty looks.

• Why am I to be discriminated against.

• What did I do to harm society which requires that I live a life more confined life than a convicted criminal?

• Registration - Removing valued workers from the scheme.

Where I agree that there are too many bad actors in the sector, I do not agree that registration will stop those who conscientiously wish to defraud and hold power over vulnerable people.

I am fortunate to have held careers in Federal and State Govt authorities where rights and obligations were part of my training and daily work practices.

I have the right to determine who works with me. And, if that person is not registered or qualified then I should not be disadvantage when I’ve made healthy and safe choices.

• My workers must comply to different standards than mainstream registration allows for.

• This isn’t cultural or religious but they are equally very worthy reason, too.

• My reasons is my disability under neurological, physical, cognitive and sensory impairments that are synergistic in their relationships (ie one or more compounds effects of another or more).

• Reducing my right of choice and control over who works with me is abelist and discrimination.

• Capable people should not be placed into a box that suits a others BELIEF system.

• KING POWERS-decision on funding

Members of parliament have their salaries and allowances determined by an independent body for good reason. To then suggest a Minister or Govt Office hold power regarding payments to scheme participants is biased and discriminatory.

• A different rule for one than for the other.

Submission 194

• The Bill intends to allow plans be adjusted on the fly, yet the budget we are told has to be managed and made to last or we will be punished. How can anyone hold stability when the threat of fund being taken at short notice abd seemingly at the whim of an elected official with agendas that may not be thst ov the Australian people.
• The minister can remove funds on a Friday afternoon and participate will be out of pocket, and unsupported continually trying to adapt to “unstable” plans, living in fear they can’t pay workers abd therefore forced to once again live unhygienic lives and isolated lives because the promise is broken and hope is gone.

NDIS was created as an Govt Authority to avoid KING POWERS, although subsequent legislation changes has moved arbitrary decisions to CEO level, which are unhealthy for the overall scheme, too.

• Adding further arbitrary control to anyone currently elected or those who come in the future, not only defies good sense and reason, but should be seen by the Quality and Safeguard’s commission as inappropriate and unsafe to participants needs as risk harm from lack of services and supports.

• An independent body should be responsible to determine what each support is to cost under participants plans.

  • Completely changing eligibility and forcing treatment:

This proposed legislation will mean qualified medical practitioner opinions and treatment recommendations are to be considered unlawful, incorrect and unnecessary to eligibility.

The NDIS instead is intending to determine medical requirements and treatment under access eligibility without knowing individual persons health, and environmental factors like where they live, who they live with, if they have a modified home or not.

￿ It also fails to capture disabillty impairment complexities where treatments are contra-indicated, something only a qualified doctor would knew.

• Inaccessible treatments based on the individuals health, responses to treatment, ability to leave home or to afford decades of their lifetimes and hundreds of thousands of dollars pursuing unreachable gold rings while on the treatment merry go round is an abnormally narrow view by any govt suggesting it is helping Australians to have inclusion and acceptance.

• An NDIS technical group “recommending” and therefore FORCING treatment is not legal and certainly not the Australian way. In my opinion and experience forcing treatment should be seen as a restrictive practice that will cause harm.

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• Doctors are “the” qualified practitioners under Australian Health dept to determine if a person has exhausted all appropriate, accessible, beneficial and effective treatments of impairment arising from a condition, ie doctors study for 7 years plus and are experts in the field of medicine (expertise medical practitioners in general practitioners, not only those who soeviskisevin a single area of medicine).

• Force treatment by a govt body is putting the patient AT RISK – I fear the Govt has not recognised the indemnity insurance complications they would open up on medical professionals, if this forced treatment situation were to be made a law under ndis access.

I have Myalgic Encephalomyelitis (Mecfs) with it’s physical, neurological, cognitive and sensory impairments all meeting eligibility as permanent and severe impairment in daily living and access for social and community activities. As far as I’m aware am one of about 150-200 participants known to be on the scheme (ndis statistics). MEcfs a nuerological condition which is similar in impairment to Multiple Sclerosis, Motor Neurone Disease, Parkinson’s, Dementia, Acquired Brain and Spinal Injuries, to name a few.

• The low number of participants with impairment arising from Mecfs is due to there being NO CURE OR REMEDY FOR IMPAIRMENTS and where management of impairment is more difficult as there is typically contra-indicated treatments in one impairment against another. - When the medically untrained ndis assessors look to an “in-house list” they initially reject access stating not all known treatments have been tried.

• Not allowing that access to treatment is prohibited directly due to disabillty impairment. - And, the medically untrained accessor does not recognise when a drug or treatment that may work for a person with similar impairment is driven by a different underlying causes.

• To a person with Mecfs the same drug or treatment will be medically contra-indicated, inappropriate, inaccessible and likely to not be effective or beneficial but the reverse – cause harm. (Only a doctor would know this)

NDIS already fights hard against the Mecfs community on grounds permanent impairment and severely incapacitated people, This is because it continues to use debunked evidence of a treatment protocol as part of meeting eligibility. That alone is discriminatory, usually overturned at ART, and now this bill proposes forcing this harmful treatment to comply with a treatment decisions lists made by unqualified persons unfamiliar with the condition or the individual involved.

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• ➖ The debunked (not) treatment (GET/Cbt) is harmful, but many patients currently force themselves under reluctant educated medical referral to attempt this faulty rehabilitation program in order to be found eligible for NDIS.

• ➕ Some take harmful testing as a 2 day Cpet test to show metabolic dysfunction making themselves more disabled for months if not permanently worse.

    -     I personally cannot access places where I cannot control temperature, chemicals, light and noise in order to be doing an unsafe contra-indicated exercise program, inappropriate psychological treatments without any chance of them being effective or beneficial as the underlying cause is NOT psychiatric.
        And, rather than being a treatment that’s effective and beneficial it will see my impairment increase to were profound high-care 27/7 SDA care will need to be paid for.
  

➖ The risk of harm and worsening the impairment as happens to those with Mecfs is one of so many reasons why NDIS TABIP team shouid not be responsible to determine treatment and lack of accessibility should NOT see the person excluded from NDIS support.

➖ Let the removal of Lists A and B fast tracking by conditions naturally and fairly adjust participant numbers under existing eligibility and functional capacity laws (because it will).

 Do not tighten existing strict eligibility rules and impose unintended consequences to individual human lives and society in general.

 Don’t allow NDIS TABID group to determine treatment - as if they are to know the individual patients medical records, and treat the environment.

￿ The Govt should not be funding a duplication of roles ie that of the Health systems/APRAH roles whereby removing medical decisions from the qualified practitioners with access to patients histories and sole interest in patients care.

    -   This is not value for tax payers money and would see a separate and new “class of citizen” emerge in society when disabillty discrimination is meant to be the law.
        
   Changing functional assessments-

As an educated person and one with lived experience in functional capacity assessment it is abundantly obvious to me that the I-can assessment is purely based on Physical impairment and Mobilty/Self-care domains.

*** The legislation changes are not removing the 6 categories of impairment – physical, neurological, intellectual, cognitive, sensory and psychosocial.

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*** Nor are the changes removing the domains – mobility, selfcare, self management, communication, socialising, learning, or access to social activitie community and economic participation.

Having an assessment I-CAN then, which limits the functional capacity to just one or two parts of the Act is inappropriate and possibly illegal.

• An NDIS-NEEDS assessment should not be based on a single and flawed tool. If a tool existed which legally identifies functional ,loss to every form of disability existed, it would be a miracle / man would be living on mars as soon as tomorrow.

            - There is a reason for the thousands of evidenced based assessment from which a medically qualified assessor can use to form qualified opinion and make LEGAL recommendations.
  

• NDIS has the opportunity and responsibility to train doctors and AHP in the correct assessment re eligible impairment and functional loss. Using NDIS staff workers who obtain a certificate to say they passed a short course and hold no life experience cannot be responsible for peoples lives.

            - Why the quality and safe guards commission would accept this, when it’s moving to higher standards by providers is an ambiguity that can’t be explained other than as bias and discrimination to disabled people.
  

Using qualified and experience medical professionals makes more sense on grounds of expertise but also on grounds of accessibility- an issue that this legislation want to strip under eligibility and now under functional capacity as well. The number of certified assessors NDIS can produce is minuscule to the number of assessment to be done at any given time.

• Are participants to be in held waiting lists until an assessor has triaged as if disability needs are elective surgery and waiting lists are set as years?

This is not what was promised to the Australian people.

   Removing human rights to a review-

If the issues I’ve drawn attention to above isn’t sufficient, the legislation then goes even further to removing rights of the disability community to fair judicial decisions.

One biased or controlling accessor and/or one tired and disinterested data entry person or one mistake in the setting of an algorithm or AI parameter and lives are shattered for 5 years.

• People will die without support because they have no justice system to access.

Submission 194

The legislation creates a “closed loop” – assessed, review, rejected, appeal tribunal can order a reassessment with same faulty tool or bias and culture grown in the accessor industry.

• The ART is left powerless to assist a large section of the community which is - discrimination.

Disability discrimination is illegal yet this proposed bill sets itself above law denying justice in the name of sustaining the scheme for future generations.

Again, I ask that you vote negative and enforce the CO-DESIGN which the current ACT requires to be a lawful decision around changes.

Yours sincerely,