Submission to Community Affairs Legislation

Committee on

National Disability Insurance Scheme Amendment

(Getting the NDIS Back on Track no. 1) Bill 2024

Ms. Allie Reilly Ms. Julie Nelson Ms. Tiffany Brown

With quotes from members of the

17 May 2024

Table of Contents

INTRODUCTION ……………………………….. 3

ME/CFS AND DISABILITY ………………. 4

ME/CFS IS AN ENERGY LIMITING CHRONIC ILLNESS ……………………………………….. 4

CHANGES TO NDIS SUPPORTS ………… 6

LIVING ARRANGEMENTS AND PARENTING ………………………………………….. 7

QUALIFYING AND NON-QUALIFYING LISTS OF SUPPORTS ……………………………… 8

USE OF DISABILITY CLASSES TO INCLUDE OR EXCLUDE SUPPORTS …………………… 11

LIMITING IMPAIRMENTS TO EXCLUDE SUPPORTS …………………………………….. 11

RIGHTS TO AVENUES OF APPEAL …… 13

REVIEWS OF ELIGIBLE IMPAIRMENTS ……………………………………………………… 14

CLASS OF PARTICIPANT …………………………………………………………………………….. 15

PLAN REASSESSMENT ………………………………………………………………………………… 17

ACCESS REVOCATION …………………………………………………………………………………… 18

CHANGES TO CONSULTATION PROCESS .. 19

RECOMMENDATIONS ………………………. 21

REFERENCES …………………………………… 23

Introduction

On 27 March 2024, the Government introduced the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (‘Bill’). This is the Government’s first legislative response to the NDIS Review Final Report released in December 2023.

A Senate Committee inquiry is taking submissions on the Bill until 17 May 2024.

The ME/CFS & the NDIS Facebook Group welcomes the opportunity to provide a submission to the Community Affairs Legislation Committee, on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track no. 1) Bill 2024, on behalf of people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The information, issues, recommendations and lived experiences used in this submission were drawn from the Australian ME/CFS community.

The ME/CFS & the NDIS Facebook Group is a support group and grassroots network for people living with ME/CFS and who have access to the NDIS or who wish to access the NDIS. The group has 3,100 members. The journey for access to the NDIS has typically been hard for many of the participants, with many having to spend their limited energy fighting for access. Many have been rejected and have given up, even though they fall into the severe and very severe category of ME/CFS.

Australians living with ME/CFS face many issues as ME/CFS is an invisible, highly disabling and contested illness for which there is currently no diagnostic test nor evidence-based treatments. For decades, people living with this condition have been ignored, disbelieved and disparaged by the medical community, their loved ones and the wider community. This is despite the condition being recognised as a neurological condition by the World Health Organization since 1969,i being formally recognised as a physical illness in numerous OECD countriesii including Australia,iii and having recognised medical criteria for diagnosis.iv This submission aims to highlight the key issues faced by people living with this condition due to systemic neglect. More than 50% of people with Long COVID will also meet the diagnostic criteria for ME/CFS.v

ME/CFS and Disability

ME/CFS is a highly disabling condition. While the condition varies in severity, even mild ME/CFS is debilitating, causing a reduction in 50% of pre-illness functioning.vi An estimated 25% of those living with the condition are severely unwell, housebound or bedbound.vii

This severe and complex chronic illness affects most body systems, particularly the nervous, immune, cardiac, gastrointestinal and endocrine systems. It can devastate the health of women, men and children, leaving many people unable to work, study or leave their homes. There is no cure and for many, it is a lifelong condition. ME/CFS is conservatively estimated to affect 0.4-1.0% of the world’s population. This means up to 250,000 Australians may be affected.

In Emerge Australia’s 2019 surveyviii of more than 1000 people with ME/CFS, respondents overwhelmingly indicated that their condition impacted their daily functioning, reducing their ability to leave the house (67%), care for others (44%), clean their homes (61%), cook meals (50%), undertake personal administration (48%) or self-care tasks (33%). Some respondents indicated that they were unable to undertake these tasks at all.

ME/CFS is an Energy Limiting Chronic Illness

Energy Limiting Chronic Illness (ELCI)ix is an umbrella term used to describe illnesses in which energy impairment is the central feature. In these conditions, impairment in the production and availability of energy at a cellular level causes significant disability. Individuals with these conditions do not have sufficient physiological energy available to undertake activities of daily living. Living with these conditions is like living with a battery which doesn’t charge properly.

Image source: Chronic Illness Inclusion

In ME/CFS, post-exertional malaise (PEM) is the core feature.x PEM is the exacerbation of symptoms following physical or mental exertion. For some, this exertion could be going for a walk; for others it might be taking a shower or reading. For those who are very

Severe, rolling over in bed can be enough to exacerbate symptoms. This means that it can take days or weeks to recover from ordinary activities like going to the shops, a medical appointment or taking a walk; for more severely affected people these activities can be entirely out of reach.

“Support workers reduce much of my PEM because they supervise my activity, to prevent over exertion. They observe and manage my activity load, simplify tasks so I can be more independent- e.g. To floss my teeth, I use a water flosser as I lack dexterity to floss with cotton. The support workers makes this possible by clearing and filling the water tub and changing floss ends when necessary. This allows me to floss for myself and avoid PEM as I’m not cleaning and filling tubs and trying to remove and fit tip ends.”

“Without NDIS I would have given up living. PEM is brutal. I depend on support workers for practically everything as I live alone. There are many items I need to be more independent but hoping I won’t have funding slashed and not get them.”

“Without the NDIS I would wash my hair once every two weeks and would occasionally become 4-8 weeks because I couldn’t afford the energy to wash it. With the NDIS I can get my hair washed twice weekly. This (along with the support worker help to do groceries, make the bed, hang the washing) has meant I can engage in society, visit friends, help with disability advocacy, have friends visit my house.”

“By providing personal care on a daily basis and assistive technology for safety, I have been relieved of some essential ADL tasks and some in-home risks, such that my PEM and thus also my orthostatic intolerance (POTS) have been less severe. I have not had a fall that required hospitalisation since I have been in the NDIS. I have not been so impaired that I cannot communicate since I have been in the NDIS.”

Changes to NDIS Supports

The NDIS Review, recommended changes to the planning process and the way participants receive funding. Specifically, it recommended using a ‘needs assessment’ to determine a ‘reasonable and necessary’ budget, built at the ‘whole-of-person’ level, rather than line-by-line for each support.

Under Section 34(1) of the current NDIS Act there is a series of legal tests that determine if a particular support is ‘reasonable and necessary’, and therefore can be funded. This includes a support be ‘value for money’, ‘effective and beneficial’, and ‘most appropriately funded or provided through the NDIS’ rather than another government program or community source.

The Review heard these concepts are technical, complex and discretionary, contributing to inconsistent and inequitable funding decisions and disputes between participants and the NDIA.

This new legislation that the Government has tabled seeks to replace the ‘reasonable and necessary’ definition with a single definition of ‘NDIS supports’ in Section 10:

A support is a NDIS support for a person who is a participant or prospective participant if:

(a) the support: (i) is necessary to support the person to live and be included in the community, and to prevent isolation or segregation of the person from the community; or (ii) will facilitate personal mobility of the person in the manner and at the time of the person’s choice; or (iii) is a mobility aid or device, or assistive technology, live assistance or intermediaries that will facilitate personal mobility of the person; or (iv) is a health service that the person needs because of the person’s impairment or because of the interaction of the person’s impairment with various barriers; or (v) is a habilitation or rehabilitation service; or (vi) is a service that will assist the person to access a support covered by subparagraph (iv) or (v); or (vii) will minimise the prospects of the person acquiring a further impairment or prevent the person from acquiring a further impairment; or(viii) is provided by way of sickness benefits; and

(b) the support is declared by National Disability Insurance Scheme rules made for the purposes of this paragraph to be a support that is appropriately funded or provided through the National Disability Insurance Scheme: (i) for participants or prospective participants generally; or

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(ii) for a class of participants or prospective participants that includes the person; and

(c) the support is not a support declared by National Disability Insurance Scheme rules made for the purposes of this paragraph to be a support that is not appropriately funded or provided through the National Disability Insurance Scheme: (i) for participants or prospective participants generally; or (ii) for a class of participants or prospective participants that includes the person.

“NDIS supports help me reduce PEM by allowing me to get tasks that I cannot do or cannot safely do done by others. I can also delegate tasks so that my workload is reduced, and my limited energy can be used for things I need to do myself or that make life worth living like maintaining friendships. I’ve also been able to access assistive technology like mobility aids and domestic appliances and technology to maximise my activity and independence while minimising my energy use & PEM.”

As a community we are very concerned that the changes to the NDIS Supports definition in the legislation will severely limit disabled people’s choice and control by restricting access to tailored supports. We have identified four areas where the changes in legislation around NDIS Supports will adversely affect the daily living and quality of life for those living with ME/CFS.

• Living arrangements and parenting
• Qualifying and non-qualifying lists of supports.
• Use of disability classes to include or exclude supports.
• Limiting impairments to exclude supports

Living Arrangements and Parenting

While it is positive to see some of the Commonwealth’s responsibilities as a signatory to the 2016 United Nations Convention of the Rights of People with Disability (UNCRPD)xi reflected in the NDIS supports there are some glaring omissions.

The most notable omission is from Article 19 a) “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”

For people with ME/CFS appropriate living & support arrangements are essential to manage their disability and prevent it from worsening. Environmental sensitivity such as to noise, chemicals & light can require specific controlled living arrangements. We are concerned that the omission from section 10 of supports that enable a participant to choose their place of residence and with who they live is intended to allow the

government to fund support at a 1:3 ratio for people who need high levels of support

which was a recommendation of the NDIS Review.

We are concerned that this funding ratio will force people into shared accommodation or into moving to unsuitable group homes or multi dwelling disability villages.

The NDIS Review’s vision is that this ratio should apply except in specific circumstances. We are concerned that if a 1:3 ratio is implemented that the Rules and needs assessment instruments will not be designed to include or assess specific circumstances as they apply to disability & staffing needs of participants with ME/CFS.

Another omission in section 10 is that ‘NDIS supports’ don’t include “appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities” as agreed in Article 23. Any Rules regarding 24/7 supports should uphold the right for parents to live with their children.

“Accessing NDIS support enabled me to return to living alone in my own home with my dog. It took me 6 months of searching to find a house that is right for me. Being housebound it was really important that I have a view of trees & a garden and that my parents live close by. I’m getting my house set up for maximum accessibility and independence. I hope NDIS support will allow me to continue to live here no matter how severe I get.”

“Before being approved for the type of SDA I need (HPS, one resident), I thought I was going to end up in a nursing home in my 20’s. Now my family are building an SDA very specific to my needs, to allow me to stay near my family, live by myself and increase my quality of life. This is not without great sacrifice to my parents. The SDA sector needs a tremendous amount of improvement for the participants who use it.”

Recommendation 1: Legislation to define NDIS supports in section 10 should be revised in consultation with human rights lawyers and representatives of the broad disability community.

Recommendation 2: Section 10 should be expanded to include support to enable participants to meet their parenting responsibilities and enable full choice in living arrangements in line with the UNCRPD.

Qualifying and Non-Qualifying Lists of Supports

The changes to Section 10, namely 10 (a) and 10 (b), indicates that there will be lists that state what will and won’t qualify as NDIS supports. The Explanatory Memorandum that accompanies the legislative bill gives examples that things like holidays, cosmetics and ‘standard household appliances and whitegoods’ as not qualifying as NDIS supports.

Many of the participants in the NDIS who have ME/CFS, use their supports and assistive technologies in their NDIS packages to lessen the impact of PEM and therefore limit the progression of their impairments. By reducing their energy expenditure, they are able to

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live a more fulfilling and better quality of life and also reduce their chance of progressing to a more severe state in the long term.

We feel it is important that NDIS keep the interpretation of adapted technologies where the participants use everyday items as way to adapt to their disability.

Removing equipment that enables a person to survive, live, thrive and retain what dignity and independence they can, goes well away from the intended purpose of the original Act and what the Parliament and people of Australia agreed to when the NDIS first came into being.

The WHO defines an assistive product as “any external product (including devices, equipment, instruments or software), especially produced or generally available, the primary purpose of which is to maintain or improve an individual’s functioning and independence, and thereby promote their well-being. Assistive products are also used to prevent impairments and secondary health conditions”. xii

ISO defines an assistive product as “any product (including devices, equipment, instruments and software), specially produced or generally available, used by or for persons with disability for participation; to protect, support, train, measure or substitute for body functions/structures and activities; or to prevent impairments, activity limitations or participation restrictions.” xiii

Both of these definitions take into account that assistive technology can be generally available products that allow an individual to improve their functioning and independence.

These changes to the legislation that specifically deny the purchase of ‘standard household appliances and whitegoods’ will deny participants the ability to improve their functionality and their independence.

One of our members, who is bedridden, was unable to get up to the door to receive premade meal deliveries and put them away and came up with a novel way of saving funds in the long term.

“I purchased a chest freezer for outside my home, where my premade meals can be delivered. This has meant that:

• I don’t need to move the boxes inside to be unpacked (impossible for me to do as a mostly bedridden person). It would be very harmful to me if I tried.
• My informal supports don’t need to be available for the full day waiting around for my meals to be delivered, just to bring them inside to the freezer.
• I don’t need support workers to be on shift for the full day for the same reason.”

Another member, who is also bedridden, was able to independently access food and drink, saved support workers time and allowed their informal supports to remain in full

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time work by purchasing a bar fridge for next to their bed.

“I bought a bar fridge that I have set up next to my bed. It means that I can independently access breakfast, snacks, drinks etc without causing PEM. It has also reduced the burden on my husband having to get me food and water multiple times during the day while he’s working full time as the sole income earner for our family.”

Small appliances, including those that are generally available, can also help make a participant’s environment safer. People with ME/CFS often have neurological impairments which mean that they don’t have typical hand strength and can drop objects. As you can imagine this can be dangerous when chopping food, handling hot food or objects. This member has made their environment safer, saved them energy allowing them to be able to partake in other activities and has allowed them to be more independent.

“I purchased a hot water dispenser which has immensely helped me not having to lift a kettle or wait for one to boil (saving multiple trips to the kitchen or standing and sitting) or fill one up regularly as support workers can do while on shift. It saves a lot of energy.”

A common and important impairment in people with ME/CFS is temperature control (disturbed thermoregulation). This can involve increased sensitivity to both hot and cold temperatures and night sweats. Fans and air-conditioning units are important part of temperature regulation and help reduce PEM and impairment flares.

“I purchased a small split system air-conditioner for my bedroom and living room. I don’t know how I would have managed summer without them as my symptoms flare drastically in the heat. They’ve made the world of difference to my sleep, comfort, pain, and temperature regulation.”

ME/CFS is also a very lonely and socially isolating condition. People with ME/CFS often have mobility issues, on top of the energy reducing issues of PEM. Using STA in a responsible manner is an important way participants with ME/CFS can stay socially active and increase their quality of life. People with ME/CFS often cannot travel far without needing to stay overnight. This member was able to participate in a social catch up with friends by accessing STA funds to enable participation in a self-funded holiday.

“I was able to attend a weekend away with friends because I could use my funding for accommodation so I could go to the destination early and stay in a cabin while I recovered from the trip. Because I could do that recovery first, I was able to then enjoy some time with my friends & I had the same personal expenses for the weekend away as they did. A bed and quiet place to rest was not a holiday for me, it was a disability support.”

Recommendation 3: Unconventional supports such as small appliances and white goods should be accepted by the NDIS as assistive technology in certain situations. Any support that is listed as not qualifying as an NDIS Support should be able to be requested via an AT request, using the existing AT guidelines, and include a recommendation from an allied health professional showing why the request qualifies as a NDIS Support.

Use of Disability Classes to include or exclude Supports

The inclusion of Section 10 (b)(ii) and (c)(ii) in the changes to definition of NDIS Supports indicates that there will be Disability Classes created that will be used to define what supports will or won’t qualify under the new framework. These disability classes will be defined by delegated legislation in the National Disability Insurance Scheme rules.

As a community we already know that the NDIA makes it extremely difficult for people with ME/CFS to gain access to the scheme. We are also aware that there has been a large uptick in people being diagnosed with ME/CFS after Covid infections and that the government is aware of the potential for increased burden on the NDIS.

Our community is rightfully concerned that these powers could be used to create a disability class that includes energy limiting conditions, such as ME/CFS, which then limits the types of supports that participants can access if they are in that class.

Recommendation 4:

Disability classes should not be used as a method of restricting access or supports for particular disabilities. Anyone whose impairments meets the functional and permanency eligibility requirements should be eligible to access the scheme and the supports that they need, regardless of the disability that causes those impairments.

Limiting Impairments to exclude Supports

Under the current framework, The National Disability Insurance Agency (‘NDIA’) determines that each support a participant request funding for is reasonable and necessary. The new Legislation will introduce ‘new framework plans’, which will be determined by a completely new process from the current NDIS framework.

Under the new legislation, a ‘needs assessment’ will determine what supports a participant needs and then will determine a flexible budget for the participant.

The needs assessment will be limited to impairments that meet the disability or early intervention requirements under (subclause 32L(3)).

We are concerned this may fail to achieve a ‘whole of person’ approach by imposing artificial distinctions in the way a person with multiple and interrelated disabilities accesses supports. This approach also appears to codify a position taken by the NDIA, which has been rejected by the Administrative Appeals Tribunal.xiv

ME/CFS can be either a relapsing/remitting condition or a progressive condition. The ME/CFS diagnostic criteria describes a wide range of impairments that people who live with ME/CFS can incur as part of the condition. These impairments are spread over the functional areas of mobility, communication, social interaction, self-management, learning and self-care.

These impairments can change in severity over the lifetime of the condition. If Impairments are only determined at access time, and a needs assessment only takes into account those Impairments, participants may be left with inadequate support when these Impairments change in severity, or new Impairments develop or arise. This could lead to concerns with safety and quality of life.

“I have lifelong chemical sensitivities which have gotten worse since I acquired ME/CFS but are not a severe impairment as required for NDIS access. Finding support workers that are willing to abide by no fragrance rules takes more time for my support coordinator, and cleaning without using harsh chemicals takes more time and skill from cleaners. I am also autistic and have repetitive behaviours relating to household objects being in their correct places. A needs assessment based on my NDIS qualifying ME/CFS impairments would not cover these extra complexities.”

Recommendation 5: The NDIS should allocate supports based on a whole of person approach and not restrict access to NDIS Supports by excluding impairments that didn’t meet the original access criteria in the participant’s access request. Legislation needs to acknowledge that mild impairments that are not enough to meet the original access criteria can also interact with impairments that do.

Rights to Avenues of Appeal

A citizen’s entitlement to review of a decision is an important aspect of government administrative decision making to ensure fairness and accountability. Currently the Act allows for internal review of a decision by a second Delegate and subsequent independent review by the Administrative Appeals Tribunal.

The Bill retains a participant’s right to internal and external review of a plan under Chapter 4, part 6 of the Act. It doesn’t, however, allow any other opportunities for internal or external review by the Administrative Appeals Tribunal (AAT) (or its future replacement) for the new earlier steps in the planning process.

A reasonable and necessary budget determined by a needs assessment which is to only assess support needs for impairments that meet access criteria is a large change to NDIS planning. The needs assessments were proposed by the NDIS review to “be completed by a skilled and qualified Needs Assessor who is a trained allied health practitioner or social worker, or similar, with disability expertise. They should spend multiple hours completing the assessment. This would include reviewing any existing information provided by the participant and trusted professionals and then meeting with the participant to understand their goals, strengths, circumstances and level of support needs. This may also involve meeting key people in the participant’s life, where appropriate. This process may also be carried out over multiple sessions at the participant’s request. In complex cases, a multi-disciplinary team could be involved.“xv

As this is to be such a lengthy, expensive process it would be prudent for some additional matters to be determined, and review opportunities for those matters to be provided, prior to the assessment taking place.

“I had the misfortune of a reassessment where many of my eligible impairments were wrongly ignored. It was by review that this oversight was corrected and training to NDIS delegates and agents was undertaken. Having the review process not only fixed my planning problem but opened opportunity for NDIS to do better with educating their people.”

We have identified several areas where we think that reviews of access, planning and funding decisions have been unfairly changed in the legislation:

• Reviews of Eligible Impairments
• Class of Participant
• Plan Reassessment
• Access Revocation

Reviews of Eligible Impairments

We firmly believe that planning should fund supports for the whole person. Evidencing every single impairment of a complex disability such as ME/CFS is extremely difficult, and it is impossible to untangle multiple impairments and their resulting disability and support needs. However, if the Act is to allow for only impairments that meet access criteria to be supported a mechanism for those to be approved is required.

There is currently no legislated requirement to notify a participant as to which impairments were used to determine they met the access criteria. There is also no mechanism to contest the Delegate’s decision that one or more impairments did not meet the access criteria.

A large number of participants initially entered the scheme via transfer from state services (“list C”) without ever completing an access form or specifying their impairments which may lead to many incorrect assumptions about the nature or full breadth of their impairments.

There is also no mechanism to contest “which impairments” the Delegate considered not to meet access criteria in an Access decision if the access request resulted in access being guaranteed. This makes sense given the repeated interpretation of the law by the AAT that the person’s disability is the be supported not just the disability arising from the access impairments. There is also currently no formal mechanism to add impairments after access. Participants must wait until after a statement of participant supports is approved before they can appeal.

It has been an ongoing practice of NDIA to not add all impairments or diagnoses to a participant’s file and refuse to fund supports for any impairments or diagnoses which they have not listed. This is a major issue for participants who report that NDIA will often give access based on one condition such as autism or psychosocial disability and ignore the physical disability that is also evidenced in the access request. This is commonly the case with complex disabilities such as ME/CFS. Often participants do not know this has occurred until they are given an inappropriate plan.

There are also many participants reporting that NDIA are also removing impairments from participant files that were previously supported or simply refusing further supports for previously supported impairments.

The Bill is not proposing any change to that. With such a major assessment of need required this should be able to occur and be appealed before a needs assessment takes place.

Recommendation

Recommendation 6:

Legislation should include at section 32 D that the plan lists impairments alongside whether the early intervention, or disability requirements or both are met. The should exclusion of any impairments should be reviewable as part of a review of the statement of participant supports.

Recommendation 7:

Legislation should include at section 28 that impairments accepted are to be communicated in the notice of an access decision.

Recommendation 8:

Legislation should include a mechanism for adding impairments after access. This should include who is to determine eligibility of each impairment and a right of appeal which can be completed prior to an assessment of support needs being conducted.

Class of Participant

We do not support classes of participant being eligible for different supports and believe in a holistic assessment of need. However, if the Act & Rules are to allow for participants to be assessed & funded differently based on class factors such as diagnosis and age this needs to be defined and subject to review before an assessment occurs. ME/CFS affects multiple body systems and causes a range of impairments, so it is vital that the appropriate support classifications and assessments are used. To not be able to review this until after a lengthy assessment wastes precious time and energy.

Recommendation 9:

Legislation should include a mechanism for making and appealing the decision as to the class a participant is allocated to for determining choice of assessment tools and supports that they may be eligible for.

After a needs assessment an opportunity to provide any corrections or additional information should be provided to ensure any misunderstandings are addressed prior to finalisation of the report. There have been past recommendations for drafts of assessments and plans to be provided to participantsxvi. It has also been recommended that Participants should also be automatically given a copy of the needs assessment reportxvii. Participants should then be able to request a new needs assessment if they consider it inaccurate.

The Bill does not include a requirement for any draft report or plan. It also does not require a copy of the needs assessment report to be provided to the participant. The Bill allows for the CEO to request a new needs assessment but gives no mechanism for participants to request one, nor to appeal a decision not to do a new reassessment.

Recommendation 10: Legislation should include provision of a report to the participant automatically. Legislation should include a right to request a second needs assessment before a statement of participant supports is approved and a decision to refuse a new assessment should be a reviewable decision.

The decision to approve a statement of participant supports will still be a reviewable decision if this Bill passes. However, there is no clarity on whether the processes that resulted in the plan funding will be able to be challenged or the budget created from that. There is an underlying assumption that assessments will be accurate and funding calculations will provide sufficient funding for needs.

The Bills says a needs assessment tool(s) will be used to assess a participant’s need for supports (subclause 32L(2)). The tool(s) will be determined by the Minister (subclause 32L(8)).

The Explanatory Memorandum released with the Bill says the tool(s) will be highly technical and it will consult with the disability community and experts in creating the tool(s).

We are concerned these processes will be flawed and not apply well to the needs of people with ME/CFS and other complex disabilities. ME/CFS representative organisations are rarely included in any co-design process and are underfunded so it is difficult for them to work with their members to understand their needs or to participate even if invited. Similarly, participants with ME/CFS have little capacity to participate in any co design & testing process. If there is no way to appeal the validity of the assessment instrument for people with ME/CFS in a review of a statement of participant supports or to appeal the appropriateness of the funding level that a formula has created, then people with ME/CFS will likely end up stuck with poor plans.

The proposal that the Minister should have sole authority to determine assessment instruments and method of funding allocation gives too much power to one individual. The Rules should require all states, territories and the Commonwealth to agree on Rules or be legislated separately by the Houses of Parliament.

Recommendation 11: Legislation should define what is reviewable in a statement of participant supports. All processes that lead to statement of participant supports be reviewable.

Recommendation 12: Instruments of assessment and method of funding allocation to be Category A Rules or legislated by parliament.

Plan Reassessment

The Bill proposes to allow the CEO to require a participant to comply with a request for a new needs assessment or to provide other documentation within, at least, 28 days. Failure to do so can result in the CEO suspending the participant’s current plan.

While there is a clause allowing an extension if circumstances prevent this e.g. a participant being in hospital, there is no definitive list of what will definitely be considered a reason to apply an extension as well as a more general extenuating circumstance criteria as currently proposed. The decision to pause a plan also needs to be a reviewable decision as participants will be left without supports if they are unable to comply, and will need a mechanism to claim back supports they have funded in the interim, if the CEO has placed an unreasonable expectation on them.

In the Bill there is also no legislated obligation for the CEO to complete any safeguarding requirements before a plan is suspended. There have previously been cases where participants have died because their funding ceased.

For people with ME/CFS, whose physical and cognitive capacity is limited and can fluctuate, arranging assessments and communicating with NDIA can be difficult. They are also often living on a very limited budget and unable to pay for reports from health professionals. They may also have disability related communication needs such as only being contacted via email. NDIA frequently ignores these needs. People with ME/CFS also often have no or limited informal supports to assist with their plan.

It should be a legislated requirement that the CEO take specified actions to ensure the participant is safe, is aware of the request and is supported to respond prior to a plan being suspended. Failure to include a safeguarding measure will lead to significant risk of harm to participants.

“The right of both internal & external appeal has allowed me to a) have my disabilities recognised in line with my clinical evidence, and to b) address the inadequacies in a plan that was given without a plan review or consultation or evidence and removed necessary supports including a complex power wheelchair.”

Access Revocation

It has been the experience of participants with ME/CFS that eligibility reassessments have been conducted when there has been no change to disability or support needs because of the ignorance and discriminatory beliefs of held by NDIA staff. This has caused significant stress, damage to health and cost for participants. Ultimately this also costs the scheme money as additional disability supports are then required.

The Bill proposes that Rules be made outlining the circumstances in which a participant’s eligibility may be reassessed. We strongly support this. We consider that the decision to put a participant through an eligibility reassessment should also be reviewable before physical, psychological & financial harm is done to the participant.

The Bill proposes to add a requirement to provide information for an Eligibility reassessment. Section 30 5) gives CEO power to revoke a participant’s access if they do not comply within 90 days.

For similar reasons to our concern regarding plan reassessment we are concerned at the lack of legislated safeguards.

• Recommendation 14: Legislation should define circumstances when an eligibility reassessment may occur and for the decision that eligibility will be reassessed is a reviewable decision
• Recommendation 15: Legislation should include safeguarding measures that must be taken prior to access being revoked.
• Recommendation 16: All reports requested by the CEO are to be fully funded by NDIS.

Changes to Consultation Process

We understand that various rules and lists of NDIS supports will be created in consultation with community disability advocacy organisations under non-disclosure agreements (NDAs). It would be impractical to include every single advocacy organisation in this consultation, however we are very concerned that organisations representing those with ergy limiting illnesses might be excluded.

Disability organisations should not be under non-disclosure agreements. They should be able to gauge feedback from their members to feed into any proposed changes. Member feedback will draw on a wealth of Disability experience to create rules which will be stronger, more workable and better consider the variety of disability presentations and life circumstances in which individuals may exist.

When choosing which disability organisations should be represented, it seems likely organisations will be chosen based on numbers of participants with the listed condition. The number of participants with NDIS access for ME/CFS is likely to be substantially underestimated as the poorly named disability category ‘chronic fatigue’ was only created recently in the NDIS software. Many participants are listed under ‘physical other’ or ‘neurological other’ categories or are listed under other conditions (eg. autism) and receiving supports for ME/CFS as part of a consideration of their whole disability.

Energy limiting based illnesses have unique concerns compared to other disabilities and are poorly understood even by health professionals, disability advocates and disability administrators. The primary symptom and impairment of ME/CFS is usually considered to be ‘Post Exertional Malaise’ where a delayed response to exertion (such as activities of daily living both physical and cognitive) produces an exacerbation of symptoms and increases disability.

This means that many activities can be done once (at the cost of severe exhaustion to the point of being unable to perform basic daily living tasks), but not repeatedly on a day-to- day basis. As such disability practically prevents these activities and supports are needed which may not be apparent to people without great experience with the illness.

Furthermore, ME/CFS often creates significant sensory challenges easily triggered by support workers and interacting with support workers can cause PEM, making general disability support solutions difficult to apply and more creative solutions are often needed. Such knowledge would only be known by advocacy organisations dedicated to energy limiting conditions which feature PEM. When PEM is frequently triggered, it is not uncommon for ME/CFS patient’s condition to get worse and suffer permanent functional loss.

Recommendation 17: Disability Organisations consulting on the creation of new rules or lists of supports should not be under non-disclosure agreements, allowing them to gauge feedback from their members.

Recommendation

Recommendation 18:

Disability organisations with extensive experience of energy limiting illnesses be included in any consultation process.

20

Recommendations

• Recommendation 1: Legislation to define NDIS supports in section 10 should be revised in consultation with human rights lawyers and representatives of the broad disability community.

• Recommendation 2: Section 10 should be expanded to include support to enable participants to meet their parenting responsibilities and enable full choice in living arrangements in line with the UNCRPD.

• Recommendation 3: Unconventional supports such as small appliances and white goods should be accepted by the NDIS as assistive technology in certain situations. Any support that is listed as not qualifying as an NDIS Support should be able to be requested via an AT request, using the existing AT guidelines, and include a recommendation from an allied health professional showing why the request qualifies as a NDIS Support.

• Recommendation 4: Disability classes should not be used as a method of restricting access or supports for particular disabilities. Anyone whose impairments meets the functional and permanency eligibility requirements should be eligible to access the scheme and the supports that they need, regardless of the disability that causes those impairments.

• Recommendation 5: The NDIS should allocate supports based on a whole of person approach and not restrict access to NDIS Supports by excluding impairments that didn’t meet the original access criteria in the participant’s access request. Legislation needs to acknowledge that mild impairments that are not enough to meet the original access criteria can also interact with impairments that do.

• Recommendation 6: Legislation should include at section 32 D that the plan lists impairments alongside whether the early intervention, or disability requirements or both are met. The should exclusion of any impairments should be reviewable as part of a review of the statement of participant supports.

• Recommendation 7: Legislation should include at section 28 that impairments accepted are to be communicated in the notice of an access decision.

• Recommendation 8: Legislation should include a mechanism for adding impairments after access. This should include who is to determine eligibility of each impairment and a right of appeal which can be completed prior to an assessment of support needs being conducted.

• Recommendation 9: Legislation should include a mechanism for making and appealing the decision as to the class a participant is allocated to for determining choice of assessment tools and supports that they may be eligible for.

• Recommendation 10: Legislation should include provision of a report to the participant automatically. Legislation should include a right to request a second needs assessment before a statement of participant supports is approved and a decision to refuse a new assessment should be a reviewable decision.

• Recommendation 11: Legislation should define what is reviewable in a statement of participant supports. All processes that lead to statement of participant supports be reviewable.

• Recommendation 12: Instruments of assessment and method of funding allocation to be Category A Rules or legislated by parliament.

• Recommendation 13: Legislation should make the decision to allow extension of time in Section 36 resulting in plan suspension a reviewable decision so that Section 41 does not apply.

• Recommendation 14: Legislation should define circumstances when an eligibility reassessment may occur and for the decision that eligibility will be reassessed is a reviewable decision

• Recommendation 15: Legislation should include safeguarding measures that must be taken prior to access being revoked.

• Recommendation 16: All reports requested by the CEO are to be fully funded by NDIS.

• Recommendation 17: Disability Organisations consulting on the creation of new rules or lists of supports should not be under non-disclosure agreements, allowing them to gauge feedback from their members.

• Recommendation 18: Disability organisations with extensive experience of energy limiting illnesses be included in any consultation process.

References

i World Health Organization (1969). Manual of the International Statistical Classification of Diseases, Injuries, and Causes of Death Based on the Recommendations of the Eighth Revision Conference (PDF). 2 (Eighth ed.). Geneva: WHO. i i Pheby, D. F., Araja, D., Berkis, U., Brenna, E., Cullinan, J., de Korwin, J. D., … & Wang-Steverding, X. (2020). The development of a consistent Europe-wide approach to investigating the economic impact of myalgic encephalomyelitis (ME/CFS): A report from the European Network on ME/CFS (EUROMENE). Healthcare, 8(2). iii https://www.nhmrc.gov.au/me-cfs iv https://www.emerge.org.au/diagnosis/ v Kedor, C., Freitag, H., Meyer-Arndt, L., Wittke, K., Hanitsch, L. G., Zoller, T., … & Scheibenbogen, C. (2022). A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity. Nature communications, 13(1), 5104. vi Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., … & stevens, S. (2011). Myalgic encephalomyelitis: international consensus criteria. Journal of Internal Medicine, 270(4), 327-338. vii Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, & Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies Press (US). viii Emerge Australia (2019). Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019. https://www.emerge.org.au/health-and-wellbeing-survey-2019 ix https://chronicillnessinclusion.org.uk/2021/04/28/what-are-energy-impairment-and-elci/#more-781 x Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, & Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies Press (US). xi United Nations Convention of the Rights of People with Disability (UNCRPD) 2016 https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-articles xii Priority assistive products list. Geneva: World Health Organization; 2016 (https://www.who.int/publications/i/item/priorityassistive-products-list, accessed 20 April 2022). xiii Assistive products for persons with disability — Classification and terminology (ISO 9999). Geneva: International Organization for Standardization; 2016 (https://www.iso.org/standard/60547.html, accessed 20 April 2022). xiv See for example McLaughlin and NDIA [2021] AATA 496 at [46], [61]; HRZI and NDIA [2023] AATA 481 at [154]; YBLR and NDIA [2023] AATA 1472 at [129], [132]; Spires and NDIA [2023] AATA 1230 at [23], [26]. xv Recommendation 25 c) p.16 Review of the National Disability Insurance Scheme Act 2013, David Tune AO, PSM, December 2019 https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act-review-final- accessibility-and-prepared-publishing1.pdf xvi Recommendation 25 c) p.16 Review of the National Disability Insurance Scheme Act 2013, David Tune AO, PMS, December 2019 https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act-review-final- accessibility-and-prepared-publishing1.pdf xvii Removing Red Tape and Implementing the NDIS Participant Service Guarantee Working together to deliver the NDIS: Independent Review into the National Disability Insurance Scheme, Final Report. https://www.ndisreview.gov.au/sites/default/files/resource/download/working-together-ndis-review-final- report.pdf