I strongly support the proposal to introduce a National Disability Insurance Scheme, and am grateful for the opportunity to provide a submission.
As it is not yet clearly elaborated in the legislation what the precise functions of the NDIS will be, or the powers of the CEO to disregard certain payments, I propose that there should be further opportunity to comment after these sections have been more thoroughly drafted.
Executive Summary
Outline
My recommendations focus on: including individuals whose disabilities may not be lifelong, in line with other national and international standards; broadening the early intervention category; better identifying individuals with disabilities in need of support; enhancing information channels to match needs with services; closing gaps in coverage and improving co-ordination with other schemes; supporting carers; increasing flexibility, autonomy and representation for all clients; reducing the burden of assessment and reporting; and extending access and awareness-raising activities to less-recognised disabilities.
List of Recommendations:
Inclusion Criteria
1 – that the definition of disability for the purposes of becoming an NDIS participant, or other government disability schemes including the companion card, be broadened to include any individuals whose disability is, or is likely to be long-term.
2 – that diagnosis or diagnostic category not be a requirement for becoming an NDIS participant, receiving the disability pension, or other disability services such as disabled parking stickers, rather that it be based on functional limitations alone.
3 – that the early intervention category be broadened so that it is not based on age or diagnosis, but rather likely outcome.
Identification of Australians with a Disability
4 – That all Australians with a disability, regardless of whether they are eligible for disability pension, be given official disability status.
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5 – that processes which identify individuals with a disability capture those who do not follow standard pathways.
Enhancing Information Channels
6 – that a hotline be established for individuals with a disability or potential disability, as well as those who are temporarily incapacitated to receive information about any services they might be eligible for, and if needed be put in touch with a case manager (see below).
7 – that all Australians with a disability, or a condition likely to be deemed a disability but not yet confirmed as one, be immediately appointed with a case manager.
8 – that available government disability schemes be better advertised, and it be made clear who is eligible.
9 – that all disability information on government websites be made fully accessible through sound-reading technology etc, without the requirement for the individual to pay for new software, and that it be made clear that this is available.
Coverage and Co-ordination
10 – that disability services are universal to Australians with a disability and that the provision of these services or their funding is not means tested. The right to disability care should be enshrined in legislation.
11 – that individuals with a disability are not allowed to fall through the cracks between workers compensation, income protection insurance, and state government schemes, ensuring universal coverage and co-ordination between all relevant schemes and agencies.
12 – that extensive steps be made to provide aids and appliances which need customisation or overseas importation, for individuals with a disability who have unusual/complex needs.
13 – that adequate home accommodations and care services are in place prior to discharge from rehabilitation facilities, and that discharge is not delayed for long periods due to belated provision of these supports.
Carers
14 – That more support be given to carers via a simpler application process.
Flexibility and Autonomy
15 – that disability services be more flexible to allow greater individual choice, to cover unusual functional limitations, and to cater to clients with fluctuating needs. The NDIS
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legislation should be changed so that this is not only reflected in policy objectives, but also reflected in concrete regulations.
16 – that the policy objectives of clients influencing the services they receive be better reflected in the legislation.
Representation – Independent Advisory Council
17 – that the Independent Advisory Council include at least some members which are not appointed by the Minister, that the Minister’s powers to terminate a member be limited, and that there be a formal process for individuals with disabilities and other interested parties to provide input to the Council, so that it is truly independent.
18 – that the Independent Advisory Council include members with expertise in a diverse range of disabilities, including invisible and sitting disabilities.
Assessment and Reporting
19 – that the assessment processes for the disability pension be made less onerous on applicants, particularly those with complex needs or severe medical conditions which might be aggravated by the process.
20 – that reporting requirements for individuals with a disability be stalled in the event that the individual is unable to report due to the disability. In these instances, it may be possible to appoint the case manager to undertake this process on their behalf if they choose to do so.
Access and Awareness
21 – That all Australians with a disability be given greater access to community, social activities, and government, by accommodating the full diversity of needs.
22 – That awareness-raising activities referred to in the NDIS legislation include rare conditions, sitting disabilities, and invisible disabilities.
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Recommendations – Rationale
Inclusion Criteria
Recommendation 1 – that the definition of disability for the purposes of becoming an NDIS participant, or other government disability schemes including the companion card, be broadened to include any individuals whose disability is, or is likely to be long term.
Many individuals with disabilities have severe conditions that have a very uncertain prognosis, particularly where they have not yet been diagnosed. This is not uncommon amongst neurological, psychiatric, chronic pain or chronic infectious disorders. An individual who is unable to work and requires significant care and is faced with a prognosis of between two years and lifelong, cannot simply live off savings and get friends to help out as somebody with a broken leg might be able to do, they need to make provisions for the rest of their future, and need as much support as they can possibly get. The severity or urgency of the need for attendant care is not changed by the duration of it.
This position is inconsistent with numerous Australian Government and international definitions of disability. Specifically: The Australian Disability pension requires the disability be likely to last at least two years. The Disability Discrimination Act 1992 (Commonwealth) definition (adopted by the Australian Department of Defence) includes individuals whose disabling condition is not lifelong. The Productivity Commission Action Plan states that ‘disability may be permanent or temporary’, and they did not adequately justify their changed position in the NDIS. The Australian Institute of Health and Welfare specifies that impairment must have lasted, or be likely to last, for a period of six months or more. The International Classification of Functioning, Disability and Health, adopted by the World Health Organisation does not specify a time period of impairment to be classified as a disability. The UK Equality Act 2010 states that impairment must last 12 months or more to qualify as a disability. The Americans with Disabilities Act of 1990, as Amended, includes impairments of anything longer than 6 months.
The NDIS definition of disability as lifelong or likely to be lifelong, appears to be one of the most, or perhaps the most restrictive definition both in Australia and internationally.
Recommendation 2 – that diagnosis or diagnostic category not be a requirement for becoming an NDIS participant, receiving the disability pension, or other disability services such as disabled parking stickers, rather that it be based on functional limitations alone.
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Some individuals with disabilities have a condition that is undiagnosed for decades, or have a diagnosis which changes. The consequences of this inability to diagnose should not befall the individual with a disability. This absence of a diagnosis does not reduce that individual’s needs, and can often increase them, as they do not have as much access to support groups or treatments which are diagnosis-based.
The current definition in the draft NDIS legislation is both too narrow, and uninformative. It does not cater to individuals with some unusual disabilities or rare conditions. A definition based on functional limitations, e.g. how long the individual can go without requiring assistance, what tasks that person can perform on their own without risking worsening their condition, whether support would enhance a person’s capacity to participate in society etc, rather than focusing on which body system initiated the disability, which is irrelevant.
Recommendation 3 – that the early intervention category be broadened so that it is not based on age or diagnosis, but rather likely outcome.
The current definition in the draft NDIS legislation privileges certain disabilities over others. It is both discriminatory, and not financially advantageous to the government to do this, as it should be equally valuable to prevent the exacerbation of disability in any individual with the same level of disability or prognosis, regardless of diagnosis.
Identification of Australians with a Disability
Recommendation 4 – That all Australians with a disability, regardless of whether they are eligible for disability pension, be given official disability status.
Many Australians with disabilities do not qualify for disability pension on the grounds that they have other sources of income, even if they cannot work at all. It makes it difficult for these individuals to negotiate for services and modifications where it is required when they are told they don’t have a disability by people who do not understand the system, or have the medical qualifications to make such a distinction.
Recommendation 5 – that processes which identify individuals with a disability capture those who do not follow standard pathways.
Examples include: conditions which slowly deteriorate, individuals who have never been hospitalised for their condition, individuals with invisible disabilities, individuals who are ineligible for disability pension because of income but still require services, individuals whose disability prevents them from actively seeking information etc.
Enhancing Information Channels
Recommendation 6 – that a hotline be established for individuals with a disability or potential disability, as well as those who are temporarily incapacitated to receive information about any services they might be eligible for,
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and if needed be put in touch with a case manager (see below).
It should be possible for any individual with a disability, or even one who is not sure whether or not they have a disability but have reasonable grounds to assume that they might, to make a single phone call to a central hotline and have any simple questions answered, then promptly be appointed a case manager.
Recommendation 7 – that all Australians with a disability, or a condition likely to be deemed a disability but not yet confirmed as one, be immediately appointed with a case manager.
This should be regardless of eligibility for disability pension, diagnosis (or lack thereof), means testing, and whether or not they receive workers compensation or income protection insurance. The case manager should serve as an information point to inform the client of all available government services, negotiate on their clients’ behalf where the client requests it, and reduce the administrative burden on the individual with a disability and their family/support networks. Clients should be able to make a single phone call to initiate this process.
Clients should be able to easily request a new case manager where they are unhappy with the present one, and the case manager should be independent of disability assessment processes, fully ensuring client confidentiality.
Recommendation 8 – that available government disability schemes be better advertised, and it be made clear who is eligible.
Information channels often do not reach the individuals they should be targeted at. Information is often channelled through support groups, which means that those with undiagnosed conditions, with functional limitations preventing their full access to the relevant support group, or those whose support groups are not sufficiently proactive are not made aware of services they are eligible for which meet their needs, even if they go to great lengths to find this information. Individual case managers could play a role in this.
Recommendation 9 – that all disability information on government websites be made fully accessible through sound-reading technology etc, without the requirement for the individual to pay for new software, and that it be made clear that this is available.
Clients should not simply be referred to the homepage of an organisation such as Comcare, Centrelink, carer organisations etc. Clients should be sent specific links or documents, all of which should be fully accessible, and where this is not sufficient to meet their needs, the case manager should assist in this process.
Coverage and Co-ordination
Recommendation 10 – that disability services are universal to Australians with a
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disability and that the provision of these services or their funding is not means tested. The right to disability care should be enshrined in legislation.
Individuals with a disability might have access to other funding such as rental income, inheritance, workers compensation, income protection insurance, donations from family, or their savings prior to the disability, however, this income might be unreliable, and individuals need therefore to save as much as they can in case it is no longer available. For example if their workers compensation is terminated due to an aggravation ceasing, leaving behind a pre-existing condition which prevents them from working, or their partner loses their job. Disability services and aids and appliances which are not subsidised, as well as the medical treatments required for such individuals can represent a considerable cost, which may even outweigh their other income. If the Australian government is truly meeting the needs of all Australians with a disability, individuals with anything more than a well below average income should not be made to bear the considerable costs of their disability.
Recommendation 11 – that individuals with a disability are not allowed to fall through the cracks between workers compensation, income protection insurance, and state government schemes, ensuring universal coverage and co-ordination between all relevant schemes and agencies.
Where other schemes deny coverage for a particular service or item such as home help or funding for disability aids and appliances, government schemes should be required to cover the individual, and the various schemes should work together to ensure coverage occurs as soon as it is needed. The statement that ‘People with a disability should be supported to receive supports outside the National Disability Insurance Scheme, and be assisted to coordinate these supports with the supports provided under the National Disability Insurance Scheme’ is not reflected in the capacities enabled by the legislation. Rather than providing support to an individual struggling to have their needs met by a scheme, it refers to revoking the benefits of an individual who has not taken all possible steps to receive compensation from another scheme. This approach is punitive, rather than supportive.
A more supportive approach could involve the NDIS providing the services as per any other client, then where appropriate pursuing compensation on the client’s behalf through the relevant agencies to recoup payments. This would ensure that: the client would not go a long period without the necessary support; the NDIS could more thoroughly ensure that every possible step was taken to pursue compensation; and the client’s condition would not worsen due to the stress involved in pursuing compensation themselves.
Recommendation 12 – that extensive steps be made to provide aids and appliances which need customisation or overseas importation, for individuals with a disability who have unusual/complex needs.
Importing a rare, customised item can be considerably expensive, and individuals with disabilities should not be prevented from having access to such items for financial
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reasons. Even those on an average income could have great difficulty meeting the costs of such items that are greater than $10,000.
Recommendation 13 – that adequate home accommodations and care services are in place prior to discharge from rehabilitation facilities, and that discharge is not delayed for long periods due to belated provision of these supports.
Insufficient funding, and competition for hospital beds can mean that patients are discharged from rehabilitation facilities without the accommodations and support that they need to get through each day. In other instances, people with severe disabilities are kept in rehabilitation facilities or nursing homes (even as young people) for long periods while they are waiting for such accommodations and/or services.
Carers
Recommendation 14 – That more support be given to carers via a simpler application process.
Carers are frequently in a position where they do not have the capacity to follow the steps involved in applying for carer support precisely because of their caring role. Where the financial support available is very small, the time required in applying for the scheme is more valuable than the money offered. In some cases, they are caring for an individual who needs constant care, but need to commute once a week and make other arrangements for care on that day, and are made ineligible on those grounds. Often their own health declines, and they eventually might lose their ability to continue to act as a carer, or even need the support of another carer themselves. As a result of this, in the long run, supporting carers in their role would place a far lesser financial burden on the government than not doing so. The case manager should provide assistance in this process.
Flexibility and Autonomy
Recommendation 15 – that disability services be more flexible to allow greater individual choice, to cover unusual functional limitations, and to cater to clients with fluctuating needs. The NDIS legislation should be changed so that this is not only reflected in policy objectives, but also reflected in concrete regulations.
The concept of a plan that cannot be changed without being rewritten is not sufficiently flexible, and small miscellaneous requests should be able to be met promptly. The grace period for a temporary absence of 6 weeks is insufficient, particularly where the individual is travelling for medical treatment.
Services should be designed around the individual clients’ needs, and the client should have more input into identifying these needs. If existing services do not meet the client’s needs, their needs should be met either through a specific workforce of flexible carers who can cover miscellaneous situations, or private organisations or individual employees
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who are able to meet the needs, and are funded to the same extent as existing services. Conditions involving fluctuating needs (for example fibromyalgia, multiple sclerosis, mental illness etc) are not less requiring of support. For an individual such as this during a high-need period, the need is absolute, and to not have the need met in the short term can greatly exacerbate their condition in the long-term. This is an important aspect of the aim of early intervention which has been espoused in policy statements.
Recommendation 16 – that the policy objectives of clients influencing the services they receive be better reflected in the legislation.
Whilst the Independent Advisory Council should be a very helpful tool in informing broader policy objectives, they would not be able to provide specific information on individual clients’ unique needs. The client themselves, or their carer if they are not able to make decisions for themselves, should have more input in this. The statement that ‘People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise informed choice and engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.’ does not match the capacities allowed for in the legislation.
Representation
Recommendation 17 – that the Independent Advisory Council include at least some members which are not appointed by the Minister, that the Minister’s powers to terminate a member be limited, and that there be a formal process for individuals with disabilities and other interested parties to provide input to the Council, so that it is truly independent.
Developing a fair and truly representative process of appointing members to the Council is clearly difficult, but the current proposal of having them all appointed by the Minister responsible for the relevant agency guarantees that independence is not possible. These members could either be appointed by a vote of all interested citizens, or disability groups. While there is difficulty in making this process fair, it should still be more independent than if they are appointed by the Minister. Input should specifically include the areas of decision-making about services, and community awareness.
Recommendation 18 – that the Independent Advisory Council include members with expertise in a diverse range of disabilities, including invisible and sitting disabilities.
The diversity of disabilities requires that a comprehensive, thoroughly researched, and flexible be established to meet the needs of all Australians with disabilities. The breadth of understanding across a diverse range of types of disabilities amongst the Council membership is essential to the process of meeting these needs.
Assessment and Reporting
Recommendation 19 – that the assessment processes for the disability pension be
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made less onerous on applicants, particularly those with complex needs or severe medical conditions which might be aggravated by the process.
Preventing the exacerbation of severe illness and disability should come ahead of being completely certain that no individual receives disability pension or services inappropriately. The vast majority of cases are genuine, and the majority is made to suffer because of a small minority. The cost to government of funding goes do not deserve pension/services, is unlikely to be significantly greater than increased assessment and scrutiny of the entire group.
Recommendation 20 – that reporting requirements for individuals with a disability be stalled in the event that the individual is unable to report due to the disability. In these instances, it may be possible to appoint the case manager to undertake this process on their behalf if they choose to do so.
The capacity to report income received or changes to an individual’s condition can be hindered or completely prevented due to exacerbation of the individual’s condition, making them physically unable to use Internet, phone, attend in person etc, to hospitalisation, particularly enforced psychiatric hospitalisation, reduction in family or other carers capacity etc. Where income has not been reported, the individual should be contacted by their case manager, and if they are unable to be contacted, disability pension should not be revoked until contact has been made.
Access and Awareness
Recommendation 21 – That all Australians with a disability be given greater access to community, social activities, and government, by accommodating the full diversity of needs.
Specifically:
a. disabled access to buildings and other venues should not be restricted to wheelchair access;
b. all government websites and communications to people with a disability should be accessible and accommodate special needs;
c. there should be alternatives to web or phone-based communication for those that have limited access to these due to their disability; and
d. Assistance should be given to disability support groups to make all of their functions, venues and information fully accessible to people with disabilities.
e. There should be more disabled parking spaces in locations where there are frequently more cars with disabled stickers than spaces, and they should be closer to medical facilities.
f. Disabled parking permit eligibility criteria should relates to function and not diagnosis or diagnostic category.
Many people with disabilities do not follow standard mobility or other requirements, for
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example they might be unable to use a wheelchair but can only walk short distances, unable to sit, unable to use a computer, have significant fatigue which frequently prevents them being able to use the phone. While there is still a need to increase access to those in wheelchairs, this alone is not sufficient.
Recommendation 22 – That awareness-raising activities referred to in the NDIS legislation include rare conditions, sitting disabilities, and invisible disabilities.
There is a great deal more awareness-raising about common or well-recognised medical conditions and disabilities, but very little about rare or invisible ones. This is precisely because the rare or invisible disabilities are more difficult to notice, so awareness-raising groups themselves do not know about them. This could be assisted by community input to the Independent Advisory Council.
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