National Disability Insurance Scheme

Inquiry into

Current Scheme Implementation

and

Forecasting for the NDIS

SUBMISSION

ME/CFS Australia Ltd

29 October 2021

This submission is structured to address the Terms of Reference.

Terms of reference

a. The impact of boundaries of NDSI and non-NDSI service provision on the demand for NDSI funding, including: i. the availability of support outside the NDSI for people with disability (e.g. community-based or ‘Tier 2’ supports), and

Many extremely disabled people lack the capacity to apply for the NDSI. This can be partially remediated by provision of Tier 2 supports to reduce the impact of the disability and enable application to the NDSI.

When I first got sick I could barely walk from gait issues etc, couldn’t do most activities of daily living, etc., etc., and yet it’s taken me 2 ½ years to get any home help that I didn’t pay for myself.

Many people are provoked to apply for NDIS because they have lost Tier 2 supports.

     ii.   the future of the Information, Linkages and Capacity Building grants

program;

Volunteer-run peak organisations that serve underfunded conditions, such as ME/CFS, have been excluded from capacity building, because they lack the capacity to successfully apply for ILC grants. The grant program needs to be reshaped to support those who are most in need, who currently miss out due to an absence of capacity in the organisations that support them.

b. The interfaces of NDSI service provision with other non-NDSI services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services;

Aged Care

People under 65

Applicants who are under 65 and are rejected for access to the NDSI are eligible to apply for supports through My Aged Care. People report that when they telephone My Aged Care, they are told that no such program exists. Some people have also reported that their treating doctors do not know about My Aged Care packages for people under 65. As a result, many people with significant impairments are missing out on much needed support.

People over 65

The highest level of My Aged Care package support is inadequate for people with severe impairments. The aged care system needs to adequately fund disability supports or alternatively, the NDS needs to accept applicants over 65. While ME/CFS is commonly acquired at a younger age:

advancing age can increase the severity of impairment;
many severely disabled people with ME/CFS who were over 65 when the NDIS began, have been locked out of disability supports.

Health

Funded support for self-management of health

We note that the Standing Committee is concerned about the cost of the NDIS and that the Minister has expressed concern about participants who become less functional while on the NDIS instead of more independent. The health system is premised on self-management. When disability makes self-care for health impossible, or when health issues are exacerbating impairments, then the NDIS is the right place to fund those necessary supports. The absence of this support leads to worsening health and thus reduced functional capacity.

We suggest that plans which include supports to enable better management of health might partially address this issue and reduce the number of NDIS participants whose function is declining while on the NDIS.

We further suggest that the Standing Committee might want to contribute to the review of the draft 10-year Primary Health Care Plan by drawing attention to the need for people with disabilities to have funded support for management of their health.

Burden of report writing

There must be a review of the purpose of reports from health professionals and funding of the same. The healthcare system is being overloaded with reporting to government agencies about their patients, including to the NDS. The Access Request Form is straight forward, yet the NDIS requires considerable additional medical and allied health reports throughout the application process and reviews of plans. Health practitioners are required to write reports without funding. Some refuse to do it, yet the applicant or participant needs reports from their own treating health professionals. Some will do it, but only at a cost that the applicant or participant cannot afford. Either Medicare or the NDIS needs to fund the required report writing.

c. The reasons for variations in plan funding between NDIS participants with similar needs, including:

i.   the drivers of inequity between NDIS participants living in different parts of Australia,

Participants in rural and remote Australia report considerable difficulty accessing health professionals who can write the reports needed to get suitable plans for support needs.

    ii.   whether inconsistent decision-making by the NDIA is leading to inequitable variations in plan funding, and

Cause of disability and resultant impairments

The NDIS has different protocols for people whose disability is caused by chronic illness, such that the provided supports are not comparable with people who have a similar level of impairment from a cause that is not chronic illness. This is at odds with the claim that the NDIS funds supports according to the level of impairment, and not according to the diagnosis.

Reviews and appeals

Plan funding is often the result of reviews and appeals. Many participants are too severely impaired to manage reviews and appeals. The cost of additional reports is also a barrier for those participants who are living in poverty.

One way of partially reducing this cause of inequity would be to ensure that precedents set at the AAT impact on NDIS policy and practice from that point forward. This would reduce the frequency of need for reviews and appeals.

        iii.   measures that could address any inequitable variation in plan funding;

Impairments resulting from chronic illness

If the NDIS persists in separating chronic illness from other causes of impairment, then there should be a separate pathway, as there is for psychosocial disability. However, our preference is for people whose impairments are caused by chronic illness to simply be treated equitably within the NDIS.

The stated claim is that supports are funded according to individual need, based on functional impairment, not diagnosis. This should be evident in practice.

Report from health professionals

Reports from treating health professionals must be respected. Impairments and support needs that have been identified by treating health professionals who know the applicant or participant should not be over-ruled by NDIS decisions that are at odds with these reports.

Inability to afford reports

Adequate funding for the acquisition of reports from health professionals will impact favourably on inequitable plan funding.

The cost of this funding will be higher for people who do not have easy access to the health system, either because they are homebound, because they live in areas that are not well-served by appropriate health professionals, or because they have impairments for which there are few health professionals in Australia with the requisite knowledge and experience. People with ME/CFS who have moved to areas with more affordable housing are often affected by all three of these situations.

d. How the NDIS is funded, including:

i. the current and future funding sources for the NDIS,
ii. the division of funding between the Commonwealth, States and Territories, and
iii. the need for a pool of reserve funding;

e. Financial and actuarial modelling and forecasting of the scheme, including:

i. the role of insurance-based principles in scheme modelling, and
ii. assumptions, measures, and methodologies used to forecast and make projections about the scheme, participants, and long-term financial modelling;

The access and planning processes require proof of high support needs

Access to the NDIS is only provided to people who outline extensive support needs. There are participants who would be comfortable with smaller packages if this did not mean that they risked being denied initial access or being rejected from the NDIS at review; and if they were assured of a more expensive plan if and when their needs changed.

Portion of NDIS finances that go directly to support needs

Only a small percentage of NDIS funding goes directly into services and supports for participants. Much of the funding is required for the NDIS system itself, for administrative costs for service providers, and for providing profits to private providers.

Systemic change is required to ensure that the NDIS budget is predominantly funding services and supports, with sleeker, more cost-effective administrative functions and a review of profit margins.

One simple efficiency would be to approve access and plans when it is evident that approval would be given through the appeals process. The financial cost of the appeals system is significant, as is the emotional cost for participants.

f. The measures intended to ensure the financial sustainability of the NDIS (e.g. governance, oversight and administrative measures), including:

Participants and the tax paying public are seeking transparent information about the

percentage of the NDIS budget which goes directly to support workers and assistive technology, compared to system overheads, administration costs, and profits.

g.  The ongoing measures to reform the scheme including:
             i.   the new early childhood approach, including whether or how early
          intervention and other supports intended to improve a participant’s
          functional capacity could reduce their need for NDIS funding, and

           ii.   planning policy for personalised budgets and plan flexibility; and

h. Any other related matters.

Thank you for the opportunity to discuss other related matters. The information below is informed by the thoughts and experiences of people with ME/CFS, but much of it will be equally representative of applicants and participants with other disabilities.

Introduction

The NDIS access, planning and delivery needs a more streamline, simpler approach. This will assist applicants and participants while reducing both administrative costs to the NDIS and the report writing burden on the health system.

Co-design with people with disabilities needs to include outreach to all disadvantaged and marginalized groups. Without this, the NDIS will remain inaccessible and unmanageable for those who need it most.

A common feature of many chronic illnesses is their fluctuating nature and specific impairments, like energy limitation, need to be understood in assessing functional impaireds

Inequity of access for ME/CFS

An FOI request indicates that 75% of applicants to the NDIS are accepted for participation.

However, only 26% of applicants with ME/CFS as their primary or secondary disability have been accepted.

Additionally, an estimated 65,000 Australians with ME/CFS are so severely impaired that they are housebound, and of those, more than 15,000 are estimated to be bedbound, yet there have only been 186 applicants.

The NDIS is clearly failing people with ME/CFS.

Even for people with ME/CFS whose severe impairments are not so extreme as to make them homebound, have very poor quality of life that could be improved through access to the NDIS.

This PLOS ONE Study identified that people with ME/CFS have the lowest quality of life amongst 20 chronic conditions, such as MS and Schizophrenia.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

Barriers to access

Funded assistance to negotiate the application process

Many applicants are simply too functionally impaired to apply for the NDIS. In the absence of a suitably skilled carer or guardian, applicants require funded assistance to negotiate the NDIS application process or to negotiate adequate initial plans.

Applicants report being rejected because their impairments impeded successful application. Where impairment is evident in the quality of the application, this

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should not be seized upon as a reason to reject the applicant. Rather, it should be a reason to provide assistance to the applicant as they negotiate the application process.

It has taken more than two years already to try to apply for access, because I’m too impaired and have no support

… so many of us can’t read more than a paragraph of information at a time. My brain fog can’t handle the text or explanations on official websites.

.. after my first rejection letter it’s taken a year and a half to feel well enough to apply again.

If there is something that could be interpreted in 2 ways, instead of taking the way that allows a denial decision, ask for more clarification on what it is.

Where carers lack appropriate skills for application, the potential participant is rejected on this basis. Supports are needed to enable carers and guardians to navigate the application process.

Not having a support is interpreted as not needing a support

The NDIS has been rejecting access requests on the grounds that if you do not currently have supports for your disability, then you must not need supports. This acts as a barrier to access for those who are most desperately in need of access because they are trying to survive without the supports they need.

I am only able to shower once a month. The NDIS claimed that I therefore did not need support for showering because I shower so rarely. My goal is to be washed more frequently than once a month.

Simplifying the application process

The volume of information required for guidance on how to apply is a clear indication that the application process needs to be simplified and streamlined.

The ARF was presumably designed to be adequate for access, yet applicants are required to supply additional information, on multiple occasions. This appears to include a policy of asking every applicant with a chronic illness as their disability, to provide more information.

Given that an OT’s expertise is assessing the functional capacity and needs of clients, a simple one-page document that the GP or specialist could fill out recommending a funded OT assessment (with participant choice) would be a much simpler approach.

We appreciate that independent assessments, including standardised tools, were an attempt to simplify the application process. However, improvements to the system need to be made in co-design with those affected, including outreach to potential applicants and current participants with significant impairments.
Participant experience is that the quantity of reports submitted sometimes results in decisions that overlook information that has been provided.

The role of the treating health professional

People with no knowledge or expertise in the underlying cause of our disability are misreading reports from knowledgeable health practitioners, as well as making false assumptions about the nature of impairments and the necessary supports. We request that reports from treating health professionals be accepted.

…the NDIS should accept doctors’ reports of permanence. Who are the NDIS staff to determine otherwise?

Applicants report being required to undergo treatments that are contrary to the advice of their treating health professional, as a prerequisite for access. This includes treatments that are known to worsen the level of functional impairment.
Applicants report that their treating health professional is sometimes rejected as a source of information on permanence and the severity of impairment. Applicants are then required to seek a report from a health professional who is not familiar with the participant, their history, and their circumstances.
This rejection of the expertise of the treating health professional is expensive for the NDIS in dealing with further information, reviews and appeals. It is a burden on the health system with requests for additional reports. It is a burden on applicants and participants who, by definition, are severely impaired.

Hidden grounds for decisions

The experience of applicants indicates that NDIS staff are making decisions based on policies and guidelines for practice that are not transparent. Participant Information Access requests provide clues to these hidden grounds for decisions.

People with ME, or ME/CFS, commonly report their disability being labelled ‘chronic fatigue’. A PIA uncovered use of an incorrect ICD -10 code that is for ‘chronic fatigue’ (R53.8), in place of the correct ICD-10 code for ME or ME/CFS, which is G93.3. The conversion of a severely disabling condition, ME or ME/CFS, into the everyday symptom of ‘chronic fatigue’, appears to have led to rejection for people whose

impairments are very severe, with an urgent need for high level support.

It is being reported constantly by people with ME/CFS that they are being rejected not according to their functional capacity but because of their diagnosis being ME/CFS.

      In conversation LAC's and NDIA planners have dropped the ME/CFS and
        talked about CF[chronic fatigue] ie we don't help people with CF you should
       not be on the scheme.

Reviews of eligibility for access

Access to the NDIS requires permanence. Reviewing eligibility is a needless stress and expense: an expense for the participant and their treating clinicians; and administrative expense for the NDIS.

        The stress that annual reassessments place on participants is ridiculous and
         has a deleterious effect on my overall well-being.

Barriers to getting reports

Barriers to getting reports for the ARF include:

long waiting times to see specialists or allied health practitioners;
costs that are not affordable for people on very low incomes;
health practitioners who refuse to write a report for the NDIS;
knowledgeable specialists and allied health practitioners not being available due to location,
closed patient lists.

This is exacerbated by an Australian and global lack of medical training in ME/CFS.

These barriers to acquiring reports requested by the NDIS can make it impossible to meet deadlines for reviews and administrative appeals.

Plans

Funded assistance to implement plans

Many applicants are simply too functionally impaired to arrange the supports which have been funded in their plan. In the absence of a suitably skilled carer or guardian, applicants require funded assistance to find and engage successfully with those whose job it is to help them, e.g. the LAC or support coordinator.

For poorly understood disabilities such as ME/CFS, which also have special needs, it is essential that each support worker is appropriate for the participant. Support is not provided in a safe and supportive way when the support workers are selected by a provider without consultation with the participant. Severely impaired participants with special needs may require funded support to find and train their support workers.
Suggestions for these types of supports have included a funded buddy or mentor system
For people with severe impairment, participants need the option to have support hours allocated to assist in organisation of administrative tasks that are inherent to participation in the NDIS.
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      The amount of ongoing admin is unmanageable for me.
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Cost effectiveness of improved supports

Participants report that what the NDIS will and will not pay for, can result in more expensive and less effective supports. For example, participants have reported that:

It has been reported that it is common for the NDIS to reject a request for simple, cheap assistive technology, but is willing to pay for a more expensive AT.
Requests for AT have been rejected, while more expensive options such as long - term support worker hours to achieve the same result has been approved. Participants report confusion around funding for meals.
While it is clear that the cost of ingredients is not covered, the nature and amount of expense that is fundable for preparation, delivery and AT, seem inconsistent. Participants find it difficult to make decisions about how to fulfil the meal support part of their plan. This is exacerbated when participants are aware that the most cost-effective option is not necessarily the one that will be approved.

Multiple plans in the one family

Families with more than one NDIS participant face considerable additional burden when trying to implement multiple plans. The impact of this burden is felt especially keenly when the person who is implementing these multiple plans is themselves severely impaired.

        I want family plans! Myself, my husband and our son all have different disabilities.
We would love to have support coordination that considered our family's needs
     holistically. There are so many double ups - transport to appointments, support with
  meal preparation and eating etc.

Updating Plans

A full review of a plan is both costly and unnecessary. Opportunity to amend or update a plan would be more efficient, less costly and would be more appropriate where needs change according to the fluctuating severity of impairment.

Everyday Expenses

The NDS often refuses necessary supports on the grounds that they are every day expenses. Income supports provided to people who are unable to work because of severe impairment are designed to provide subsistence only. Expenses that are considered everyday by the NDIS are not everyday expenses for people living in poverty and need to be funded.

NDIS System

Inclusive Co-design

Co-design with people with disabilities needs to include outreach to all disadvantaged and marginalised groups. Without this, the NDIS will remain inaccessible and unmanageable for those who need it most.

Too often a group of incapacitated people are required to fit into a model designed for a different group of incapacitated people. This is a barrier to equity.

People with ME/CFS report constant challenges in attempting to make their impairments and their support needs fit. In particular, the disabling impact of energy impairment does not fit the current NDIS models for access and design of plans.

As identified by Senator Jordan Steele-John at Senate Estimates on 28 October 2021, the NDIS accepts episodic or fluctuating severity of impairments for psychosocial disability, but not for other conditions. Incapacities can be episodic or fluctuating, at the same time as being permanent and significantly disabling. The episodic and fluctuating severity of impairments must be integrated into the NDIS model, in a co-design process with affected applicants and participants.

Equity For People Living In Poverty

Equity for people living in poverty needs to take account of the cost of reports, the cost of appeals and the basis on which the NDS declares AT to be an everyday expense.

Understaffing Of LACs

Participants report difficulty accessing help from their LAC. For the current administrative burden, LACS seem to be understaffed.

Reducing duplication of appeals

Precedents set at the AAT should impact on policy and practice from that point forward.

There is an unnecessary burden on participants, the NDS, the health system from additional report writing, and the AAT from multiple appeals on the same issues.

MyGov Portal for applicants

Applicants have suggested that records of correspondence should be available in the MyGov NDIS Portal, as soon as a reference number has been allocated, rather than only available to NDIS participants.

Simplifying and streamlining of NDIS to assist staff

Participants report receiving inconsistent information from NDIS staff via telephone. The simplification and streamlining of all aspects of the NDIS would not only assist applicants and participants but would lead to fewer errors in telephone advice.

Supplying reasons for a decision

Reasons for a decision should be provided to applicants and participants at the same time as the decision.

Decisions are brief and devoid of specificity. The applicant is given no insight into the issues underlying the decision.
Applicants and participants report that when the reasons for a decision are requested, it is common to discover that the decision was based on an error or a deficiency in the health practitioner’s explanation of permanency, severity of impairment, or why a treatment proposed by the NDS would not result in substantial improvement to the impairment.
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There is an unnecessary financial burden on the NDS and burden on applicants,
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participants and their treating health professionals, when simple clarifications could avoid the need for a review or appeal.

Psychological impact on applicants and participants

Applicants and participants report finding applying and planning processes traumatising. People are required to focus on “things I can’t do”, which is psychologically damaging and runs contrary to strengths-based treatment models.

The NDS is designed around setting and meeting goals, yet the processes require a focus on deficits rather than goals. Severity of impairment is affirmed at the time access is granted. There should be no need to constantly revisit the grief that comes with those impairments.

Transparency

The policies and protocols for making decisions should be transparent. Applicants and participants report negative consequences from barriers and constraints of which they had no prior knowledge. One example is described above in which applicants with severe impairments from disabling ME/CFS are refused access because their illness has been coded as the common system of ‘chronic fatigue’.

While people report significant problems with the DSP Impairment Tables, some NDIS applicants have commented that at least the Impairment Tables are a transparent process.
NDIS forms invite a simplicity of response which leaves the way open for NDIS to deny a request due to lack of detail.

Support for health professionals writing reports.

Health professionals refuse to write reports for the NDIS and others struggle to understand what is required in the reports.

The complexity of issues to be covered in reports is time consuming for health professionals. This is exacerbated by lack of clarity about what is expected in reports.
The availability of guidelines for reporting professionals is welcome, but experience indicates that it has not adequately addressed the challenges facing the health professional.
Applicants and participants often lack the funds to pay for reports. Funding should be available through Medicare or through the NDIS.
A dedicated support line for doctors to ask questions about report writing may help.
Health professionals should be invited to co-design policies and practices that involve report writing.