National Disability Insurance Scheme Amendment
(Getting the NDIS Back on Track No. 1) Bill 2024
May 2024
Emerge Australia is the national patient organisation providing services and evidence-based education about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Increasingly, Emerge Australia works with those impacted by post-acute sequelae of COVID-19 (known as Long COVID) because of the striking symptom similarities, with estimates suggesting up to 45% of all people with Long COVID meet the diagnostic criteria for ME/CFS.
Up to 250,000 Australians live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic, complex, disabling, multisystem disease. For a majority of patients, ME/CFS develops after contracting a viral or bacterial infection. Once fit, healthy and active, people with ME/CFS live with a range of disabling symptoms including post-exertional malaise, cognitive impairment, reduced energy and an inability to function at pre- illness levels.
An estimated 25% of people with ME/CFS are house or bed bound however few people with ME/CFS have access to NDIS support due to poor understanding of the disease, most notably poor understanding of the core symptom, post-exertional malaise. Accessing the NDIS based on ME/CFS as a primary disability is so difficult that some people opt to apply for access based on one of their comorbidities instead, even if these are less significantly disabling than their ME/CFS. Changes to how the NDIS assesses and supports people with ME/CFS and Long COVID are much needed.
The proposed amendments to the National Disability Insurance Scheme Act are the most significant changes to the Bill and the scheme since its inception. These proposed changes will have enormous impact on people with disability generally, with specific impacts on people living with energy-limiting chronic conditions like ME/CFS and Long COVID.
1 C. Kedor, et al (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.
Summary of Recommendations
A summary of the recommendations in this submission are provided below.
Recommendation 1: A statement be included in the amended Bill to ensure that the new, and any future, NDIS rules will be designed and implemented with extensive consultation and co- design with the disability community.
Recommendation 2: The draft Rules are released for consideration as a matter of urgency.
Recommendation 3: The fundamental aspects of the NDIS such as those related to access, assessment, supports and the early invention pathway be enshrined in the legislation rather than left to rules and determinations.
Recommendation 4: Provide more limitations on information-gathering powers, including on the type of information that can be requested, and restrictions on the negative consequences of failing to comply.
Recommendation 5: Co-design the assessment and budget-setting process and include people with energy- limiting, chronic conditions.
Recommendation 6: Co-design of needs assessment tool, including people with energy-limiting chronic conditions, who are often excluded from such processes.
Recommendation 7: Needs assessors should receive evidence-based education about energy-limiting diseases, which must include education about post-exertional malaise.
Recommendation 8: A process of appeal must be implemented for needs-based assessments, and this assessment process must be designed to accommodate the needs of people with energy-limiting chronic conditions.
Recommendation 9: Co-design will assist the NDIA to understand the breadth of supports required by people with energy-limiting, chronic conditions, and update associated supports definition.
Recommendation 10: Participants should be informed from the beginning of any NDIA process that they are able to apply for deadline extension. The process to apply for, and receive, deadline extension should be easy to undertake.
Proposed changes
As a member of the Neurological Alliance Australia (NAA), Emerge Australia has contributed a submission that details the NAA’s concerns about the proposed Bill for people with Neurological conditions. The primary concern raised in the NAA submission, and reiterated here, is that much of the details regarding ‘Rules’ and determinations are yet to be stated, making it difficult to assess the true impact of these changes, including participants’ choice and control over their lives. In particular, we would like to see the crucial importance of co-design principles, which are at the heart of the NDIS, featured prominently within this Bill. As recommended in the NAA submission, we recommend:
Recommendation 1: A statement be included in the amended Bill to ensure that the new, and any future, NDIS rules will be designed and implemented with extensive consultation and co- design with the disability community.
Recommendation 2: The draft Rules are released for consideration as a matter of urgency.
Recommendation 3: The fundamental aspects of the NDIS such as those related to access, assessment, supports and the early invention pathway be enshrined in the legislation rather than left to rules and determinations.
Further to these broad recommendations, we specifically address concerns about the broad level of information-gathering powers proposed in the Bill. Currently, the powers are much too broad and consequences of not providing the required information are highly punitive. People with disabilities are highly vulnerable. Powers given to the NDIA must be limited and must address this power imbalance as well as concerns of participants’ ability to maintain control over their lives.
Recommendation 4: Provide more limitations on information-gathering powers, including on the type of information that can be requested, and restrictions on the negative consequences of failing to comply.
Matters specific to energy-limiting, chronic conditions
The remaining recommendations made in this submission relate specifically to people with energy-limiting, chronic conditions like ME/CFS and Long COVID.
1. Access determined by functional assessment, rather than medical diagnosis
We believe this will be a welcome change for people with ME/CFS and Long COVID, if appropriate measures are put in place. This is because poor understanding of the symptoms of energy limiting, chronic conditions, combined with preconceived ideas about symptoms being “just fatigue”, and the conditions being temporary and treatable with exercise, have limited access to the NDIS for many, significantly disabled people.
Due to the lack of information about how this functional assessment process will work at this stage, there are some key points we make to ensure our patient cohort has fair and equitable access to the scheme.
Who will conduct the needs assessment?
As mentioned, despite the significant disability ME/CFS and Long COVID can cause, access to the scheme has been limited due to poor understanding of the disease. While a shift away from medical diagnosis and towards functional assessment is welcome, this alone will not improve access to the NDIS for people with these conditions. This is because NDIA assessors and health professionals often do not understand how to assess functional capacity in these fluctuating conditions.
The proposed bill does not make it clear who will conduct the needs assessment, or how this process will differ from the individual assessments proposed (and ultimately rejected) by the previous government
We recommend an allied health practitioner or social worker with disability expertise, preferably specific to energy-limiting, chronic conditions, must be used to conduct the assessment. The health professional must have proven education in, and understanding of, post-exertional malaise to adequately assess level of disability for someone living with an energy-limiting, chronic condition.
Recommendation 5: Co-design the assessment and budget-setting process and include people with energy- limiting, chronic conditions.
More information and co-design of needs assessment tools
The proposed amendments indicate that the needs assessment will utilise a needs assessment tool. It is unclear what this tool is or how it will apply to people with energy-limiting chronic conditions. Given the lack of understanding of these conditions by many health professionals, it will be imperative that such tools are co-designed within the disability community generally, but also including with people with lived experience of these conditions, to avoid unintended consequences of the tool.
Recommendation 6: Co-design of needs assessment tool, including people with energy-limiting chronic conditions, who are often excluded from such processes.
What is the needs assessment appeal process?
It is unclear in this Bill how a new appeals process would occur. Indeed, it appears that a needs assessment is not able to be reviewed. Needs assessments must be reviewable decisions, as inaccurate and inappropriate needs assessments are highly likely for these conditions.
As mentioned, energy-limiting chronic conditions like ME/CFS and Long COVID are not well understood, and this is especially true of the functional impact of these conditions. It is not uncommon for people with these conditions to be incorrectly assessed as more capable than they are by assessors without sufficient knowledge.
Without an avenue for review, participants would be powerless to address such errors. We strongly advocate that the needs assessment must be a process that can be reviewed, and this review process must take into account people with limited energy.
Recommendation 7
Needs assessors should receive evidence-based education about energy-limiting diseases, which must include education about post-exertional malaise.
Recommendation 8
A process of appeal must be implemented for needs-based assessments, and this assessment process must be designed to accommodate the needs of people with energy-limiting chronic conditions.
2. “NDIS supports” need to be defined
We acknowledge the intention of the changes to the budget moving from line-by-line item allocation to a broader budget to allow greater flexibility for the ‘reasonable and necessary’ supports NDIS will fund. However, in the proposed Bill, the current definition of what supports will be funded is too narrow, and excludes many reasonable and necessary supports. The definition is also very difficult to understand, making it inaccessible for most people with disabilities.
The Explanatory Memorandum indicates that “standard household appliances and whitegoods will not qualify as NDIS supports”. However, ordinary household appliances and whitegoods are often utilised by people with disabilities, including those with energy-limiting chronic conditions like ME/CFS or Long COVID, as assistive technology to help them manage their disability.
Some examples include:
- Air conditioning and fans help with the effects of temperature dysregulation
- Mini fridge installed next to the bed helps bedbound people access food and drink independently
- Hot water station helps those unable to lift a kettle to make a cup of tea
- Stand-alone freezer allows those who are bedbound to have preprepared meals delivered directly to their freezer, without having to be out of bed to greet the delivery person at the door
- Clothes drier helps those who are unable to hang their clothes on a washing line to wash their clothes independently
- An iPad can be the sole means of communicating with the outside world and avoiding social isolation for someone who is housebound or bedbound.
While these items may seem like ordinary household goods for able-bodied people, they are reasonable and necessary supports for many people with disabilities. Disallowing these supports through the NDIS means that, instead of gaining a modicum of independence, these participants would be reliant on support workers to undertake these tasks, ultimately costing the NDIA more than these household goods, or that they would simply be less functional. For example, a paid support worker would need to wait for several hours at the participant’s home for meal delivery.
Another issue in proposed supports criteria is that an NDIS participant with ME/CFS may not always be able to provide the required “evidence-base” to justify their required support. This is again due to the significant lack of research about the disease and effective management strategies. If this criterion is not able to be met, it would reduce the choice and control of the NDIS recipient, in contradiction with the intention of greater budget flexibility.
Recommendation 9
Co-design will assist the NDIA to understand the breadth of supports required by people with energy-limiting, chronic conditions, and update associated supports definition.
3. NDIA processes should be reasonable and flexible
Further to Recommendation 4, strict deadlines are often difficult for people with energy-limiting conditions like ME/CFS and Long COVID to meet. Living with an energy-limiting condition means that tasks often take longer to achieve, because the energy is not available to complete tasks within what may be considered a normal amount of time. Adjustments to timeframes for people with ME/CFS and Long COVID are common disability accommodations in school and workplace settings. These adjustments should be easily available when engaging with the NDIA as well.
In addition, deadlines to comply with getting assessment from professional are also difficult because there are not many health professionals who understand ME/CFS. Applicants will most likely need to wait longer than 28 days to get an appointment with a health professional who understands the disease and is able to assist with the application.
Therefore, it is essential the process of asking for more time is easy to undertake, so as not to further strain people with limited energy, and to give more realistic deadlines. These recommendations should apply to other situations with strict deadlines, such as the 90-day deadline for revoking a participant’s status.
Recommendation 10: Participants should be informed from the beginning of any NDIA process that they are able to apply for deadline extension. The process to apply for, and receive, deadline extension should be easy to undertake.