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Amendments To Terms Of Reference

Towards Good Lives

A network of people concerned with the development of the best funding mechanism towards good lives for people with disabilities in Australia

A proposal for immediate and participatory amendment of the process, substance, and framework of enquiry towards a national disability insurance scheme (NDIS)

March 2010

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14 Amendments

1) An investigation of reasons for the current level of performance of disability services, including their quality of service, must be part of the terms of reference.

2) Mechanisms towards assuring quality of service must be examined as part of the terms of reference.

3) An investigation into (and) appropriate definitions of disability must be included into the terms of reference.

4) There must be reference to an examination of fundamental needs of people with disabilities towards which any NDIS is to be responsive.

5) There must be examination of the nature of vulnerability of people with disability and how such understanding contribute to constructions of needs of people with disabilities towards which any NDIS is to be responsive.

6) Reference to the proposed eligible group of those with “profound and severe disability” must be removed and re-assessed in relevance to needs and vulnerability.

7) The terms of reference must include examination of appropriate funding mechanisms for disability advocacy (including systemic, individual and Citizen Advocacy) as an important response to need of protection and enhancement of the interests of people with disabilities.

8) The terms of reference must include examination of ways in which to fund development of disability advocacy towards its maximum effectivenes.

9) The terms of reference, structure of the productivity commission's enquiry and Independent Panel must be revised to encourage and support genuine participation of people with disabilities and their representatives in all aspects and stages of the enquiry. This itself must be done in a fully participative fashion.

10) The terms of reference must be amended to reduce an economic focus on the inquiry and maximise a focus on the fundamental needs of people with disabilities. One way is to acknowledge this focus in the appointed body of inquiry, the Productivity Commission, in the terms of reference together with a commitment to apply a truly wholistic view of disability, in part achieved through the other amendments, proposed here.

11) The alternative position is to appoint a more appropriate body of inquiry at this stage. Whereas preferred, we are not in a position to suggest what body this should be, nor assess the feasibility of such a change at this stage.

12) The nature and substance of the interests of people with disabilities; carers/families; disability services; and government must be clearly stated in the terms of reference and a commitment to the primacy of that of the first group must be made in the preamble to the terms of reference.

13) The terms of reference must explicitly state that the inquiry will examine the most appropriate independent evaluation and review mechanisms for NDIS.

14) The appropriateness of Medicare and the national superannuation scheme as models for an NDIS, must be examined in the terms of reference.

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Introduction

Towards Good Lives  is a network of people, independent of organisations, concerned about the process to date, proposed substance and framework of inquiry towards a no-fault disability compensation scheme. This scheme was until recently called the National Disability Insurance Scheme (NDIS), now renamed the National Disability Long-term Care and Support Scheme. For issues of readability and public recognition of the old acronym 'NDIS", we will use NDIS throughout this document in referring to the National Disability Long-term Care and Support Scheme.

Towards Good Lives  would like to see a new funding and development approach towards being of great service to people with disabilities. The NDIS that is currently on the table is counter productive to that end as well as to some parts of the UN Convention on Rights of People With Disabilities, and needs amendment. Here we propose some vital amendments.

People with disabilities are the central beneficiaries

Our orientation towards NDIS is people who have disabilities. We note that carers are also to be beneficiaries under the present proposal. We acknowledge their interest, as having important overlaps with that of people with disabilities, but also recognise conflicting interests.

We agree with the inquiries' underlying premises that the present disability service system is not functioning as well as it could, many people with disabilities and their families are unhappy about this and want a paradigm shift in how their needs are met. Attending with full care, to the fundamental needs of people with disabilities is the best, if not only, way to respond to needs of carers.

We do not agree that the process to date and present terms of reference are the correct vehicles towards such an aim. Instead we believe that thee current process, substance and terms of reference are acting contrary to the interests of Australians who have disabilities.

Purpose

The purpose of this document is to propose that the current terms of reference of the feasibility study towards the NDIS and composition and purpose of the independent panel guiding the study be amended forthwith.

Process

We propose that this be done in a timely fashion, so that time lines of the planned community consultation commencing in April, are not compromised to a great extent.

Importantly, we also propose that the amendments must be progressed in a genuine spirit and practice of full participation of people with a direct interest in disability.

Before we set out the issues that we believe warrant amendment of the terms of reference, we give some background.

Background

A National Disability Insurance Scheme (NDIS) was first proposed by the Whitlam government in 1974 but following a change of government this idea was buried, to re-surface in the Rudd government's national summit of 2007.

In essence the present idea is about a universal, no-fault universal, taxpayer (or from general revenue) funded disability insurance scheme which would raise funds to meet the needs of Australians with disabilities, who have impairments from birth or acquired later in life.

Whereas the factors that drove the idea in 1974 were about ideals towards compensating against the disadvantage that accompanies disability, the present proposal is promoted in that cause but predominantly serves other, powerful interests, that of government Treasuries and the large disability services industry, mostly funded by government.

How NDIS was progressed

Just three disability service provider organisations (Yooralla Society (VIC); Spastic Centre (VIC); National Disability Services, where the latter is the peak disability service provider body) took the Summit idea, and with government support, developed it to a stage where the Productivity Commission is charged with a feasibility study “to enhance the quality of life and increase economic and social participation for people with disability and their carers.”

They cast their message as one of recognition of a “broken” and “dysfunctional service system” (theirs) and NDIS as a “paradigm shift”, offering “revolutionary change” towards solutions for many desperate, ageing parent/carers, and more resources for Australians with disabilities. As Australians with disabilities who responded to 'Shut Out', another government inquiry, about the National Disability Strategy, called for a “paradigm shift” in the way they receive service, these messages seemed to converge. But what Australians with disabilities need and want is a fundamental change towards better lives. A change in the values that underlie being-of-service. Paid services are only one part of a range of approaches towards that.

What the NDIS offers is “more of the same”, in the name of change. For example, at no point does the NDIS campaign and inquiry address an examination of the quality of service; define what disability is; refer to the significance of vulnerability in arriving at constructions of need; or even defines 'need', in an approach that they say will be “needs-based.” It appears strongly based upon economical/medical models of framing disability, those very models described in disability literature as disabling people who have impairments.

They seized the agenda on a broad platform of support for an NDIS, including among disability groups who see NDIS as a significant break-through towards an 'entitlement' to services, aids and equipment. The question is “entitlement to what” in a process in which they were hardly involved, in the developing of a structure of inquiry into this initiative – a feasibility study into an NDIS. An inquiry into their destiny from which they are to date virtually excluded.

Separation and clarification of interests in an NDIS

There are at least four interests at play in an NDIS, where that of people with interests come last, unlike the 1974 motivation by the Whitlam government. These interests are in the main government; disability services; carers/families; people with disabilities, in that apparent order of priority. The last group has, of course, the least political power. They are presently the central priority in rhetorical terms only. As the process and substance of the NDIS, its government-sponsored reports, and the current feasibility's terms of reference show, they are in reality little more than, in the main, means to the ends of the other interests, including that of some constructions of carer/family interests.

But as the only interest group that sees all others evaporate when taken out of the equation, this obviously the only group that deserves central focus in this inquiry.

Nevertheless all of these interests all have some legitimacy. But a lack of transparency, exploration of their overlaps and common interests, and consequently lack of any attempts at mechanisms that would place the interests of Australians with disabilities central, have now led to terms of reference for a government study that can only be described as a gilded cage for narrow 'community consultations' with Australians with disabilities, to commence in April, 2010. A token exercise which will be little more than a funnel for largely pre-determined outcomes.

The NDIS has excluded the participation of the group that it says is central to its concerns, and is about “social and economic participation.”. Australians with disabilities, up to this point have had no meaningful part in constructing anything about these plans. As a result their vital interests remain outside the feasibility study's terms of reference.

We allege that the main interests that government has in mind is to get escalating costs associated with disability services and disability support pensions off Treasuries' balance sheets. The main interest for the disability services industry is to safeguard its economic sustainability. We allege that the interests of people with disabilities are undermined by the dominant values, exclusionary processes of development and substance of the inquiry, as reflected in its terms of reference.

We allege that the study is predominantly about money (saving government costs of disability and are ensuring financial sustainability of the disability services system). It is not inquiring into those aspects of the disability services industry that could make a positive, qualitative difference to the lives of Australians with disabilities.

Towards Good Lives requests immediate amendments are made to the Terms of Reference

Therefore we call for insertion into the Productivity Commission's feasibility study into an NDIS, issues of substance, that are vital to the interests of Australians with disabilities, to achieve a revised terms of reference, and their genuine participation in the conduct of the feasibility study. We call for substantial changes to that end, in a fully participative manner while the community consultation time lines are not compromised to any great extent, and that the inquiry can proceed with the greatest possible chances of success and sustainability. These amendments must be made in a genuinely participative fashion with people with disabilities and their representatives. Not just through the National People with Disabilities and Carers Council (NPWDACC), which also has an inherent conflict between interests of people with disabilities and carers.

Why amendments are in everyone's interested

To pause at this point and rethink this inquiry in this manner, before community consultations are commenced in April under the present terms of reference, is also important in view of a hardened rhetoric by Opposition parties towards the interests of Australians with disabilities. The strongest possible construction of any NDIS, with full participation of Australians with disabilities (a constituency upwards of  20% of the population) is in the interests of its sustainability for the long-term. Any government that would recognise the importance of their meaningful voice at the table in these ways, would receive their vigorous support in constructing something that would live up to the rhetoric of a paradigm shift.

Australians with disabilities in principle support any national approach towards a greater security of funding for their needs, and any scheme which would contribute towards their acceptance and that of disability as a normal part of life. We fear that the narrow construction of the present inquiry is highly unlikely to lead towards a better situation for them, and may even make it worse.

Australians with disabilities have contributed to countless inquiries, while they are also precisely those people with a great interest in using their time and energies wisely. These consultations must be respectful of this in ensuring that the questions asked cover all the issues relevant to their needs. If the substance of the consultations is left as it is now it would represent yet another gross waste of limited resources towards the well-being of people with disabilities.

If these amendments were not made we know that the resulting consultations would likely be the subject of ongoing public disability critique and protest. Obviously it is in everyone's interest to proceed as co-operatively as we can, while allowing room for critique.

For such reasons as above, and more, we propose amendments that include the following vital issues for inclusion in the inquiry.

The amendments

Quality

1) An investigation of reasons for the current level of performance of disability services, including their quality of service, must be part of the terms of reference.

2) Mechanisms towards assuring quality of service must be examined as part of the terms of reference.

A central premise of NDIS, is that the disability services system is 'dysfunctional', and 'broken.' To know its causes would obviously be in the interest of framing good, functional terms of reference in a feasibility study for a scheme that is offered, in part, as a remedy for this 'brokenness.'

We are not aware of any study undertaken by the government, or where it may rely on other reports about what is dysfunctional about government-funded disability services. What are the causes, including service quality and responsiveness to needs. Whereas Shut Out reports that “Services were characterised as unavailable or unaffordable or of such poor quality as

to be of little benefit”, no detail is available. This, despite 56% of Shut Out respondents identifying the service system as “barriers” to “their participation.” No analysis of “barriers” is provided  in the report.

An analysis of the problems of the disability services sector is essential in framing any remedies. Funding is never value-free and has impacts on quality. The quality of service is also related to reducing wasteful service.

Likewise the terms of reference must include an examination of ways in which quality of service can be assured. Not to do so is obviously not in the interests of people with disabilities, nor is it in the interests of any effectiveness of any services funded by an NDIS.

Defining disability

3) An investigation into (an) appropriate definitions of disability must be included into the terms of reference.

The feasibility study's terms of reference do not define “disability.” Nor is there a definition in the government-commissioned 'The Way Forward' report, or preceding Price Waterhouse Cooper report. We note the use of medical/diagnostic labels in prioritising the high-cost group of people with severe or profound disability as primary beneficiaries to NDIS. We also note a description, by a prominent Independent Panel member, of disability, under NDIS, as “transform[ing] the way we think about disability, moving it from a welfare and charity issue to a risk and insurance issue.” In other words, disability as a liability and burden. As examples of disability as a burden have been used frequently by those on the Independent Panel, in promoting NDIS, we take this very seriously.

The dominant view among disability-led groups as well as many disability services, accept that disability largely arises from impairment as a result of complex interactions, involving dominant social values and attitudes, intra-and inter personal dimensions, and environment. The disability field has moved beyond acceptance of a medical view of disability as a diagnosis of deficiency or a good assessment of need, and certainly does not accept that disability should be characterised as a liability and burden.

The Un Convention on Rights Of People With Disabilities, to which Australia is a signatory, also recognises disability in wider terms than is the case in the government's inquiry as: "disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with other."(Preamble, (e))

To leave the depiction of disability as it is in the current reports supporting the terms of reference and in the terms of reference in itself will inevitably lead to the commission's recommendations, that are framed within, not only inaccurate, but disabling views of what disability is, Out of touch with the reality of daily life for Australians with disabilities. Out of touch with the UN Convention.

Again, if left unattended these out-of-touch terms of reference must also lead to recommendations that will be ineffective in making any positive difference. This would mean further waste of limited resources that are so sorely needed.

Needs

4) There must be reference to an examination of fundamental needs of people with disabilities towards which any NDIS is to be responsive.

5) There must be examination of the nature of vulnerability of people with disability and how such understanding contribute to constructions of needs of people with disabilities towards which any NDIS is to be responsive.

6) Reference to the proposed eligible group of those with “profound and severe disability” must be removed and re-assessed in relevance to needs and vulnerability.

There is no definition of the needs that an NDIS is to meet in a study of a scheme that is said to be needs-based. There is a reference to aiming for social and economic participation but obviously this is not in any way a description of all relevant, or fundamental, needs that people with disabilities have.

There is mention also that those with “moderate disability” may also get some benefit from NDIS. But all this medical/economic labelling is a bad indicator of needs arising from disability experience. As the Minister knows, for example Aboriginal people with disabilities face a very high vulnerability to abuse, neglect, isolation and so on, because of the combinations of disadvantage caused by Aboriginality and disability. You don't have to have a severe or profound disability as a disabled Aboriginal person to have a significant level of fundamental needs. Likewise people with even a low level of intellectual disability can be at high risk, because of their suggestibility and other reasons. Australians with disabilities make up over 10% of the prison population. Obviously, these highly vulnerable people also would often have significant needs. Yet under these terms of reference they would not benefit, and worse, their situation falls outside the terms of this inquiry.

A heightened state of vulnerability is an inevitable part of the experience of many Australians with disabilities. Reasons for it refer to understandings and definitions of the nature of disability.

Disability advocacy

7) The terms of reference must include examination of appropriate funding mechanisms for disability advocacy (including systemic, individual and Citizen Advocacy) as an important response to need of protection and enhancement of the interests of people with disabilities.

8) The terms of reference must include examination of ways in which to fund development of disability advocacy towards its maximum effectivenes.

Whereas strictly speaking disability advocacy is not a 'service', it is funded under various categories by the Commonwealth government within its disability portfolio. It has been funded by the Commonwealth government since the late 1980's. Advocacy is meant to be a safeguard for people with disabilities who face threats to their wellbeing from a range of areas, including sometimes from the disability service system itself. Yet there is no mention of NDIS providing any funds for this vital sector in the terms of reference, nor in any of its supporting reports, funded by the government.

Yet good disability advocacy can make important contributions to the well-being of people with disabilities, and indirectly to the responsiveness to needs by disability services.

Participation

9) The terms of reference, structure of the productivity commission's enquiry and Independent Panel must be revised to encourage and support genuine participation of people with disabilities and their representatives in all aspects and stages of the enquiry. This itself must be done in a fully participative fashion.

Recognizing the importance of the principles and policyguidelines contained in the World Programme of Action concerning Disabled Persons and in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in influencing the promotion, formulation and evaluation of the policies, plans, programmes and actions at the national, regional and international levels to further equalize opportunities for persons with disabilities. (UN Convention on the Rights of People With Disabilities, Preamble, f.)

and...

Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them. (Preamble, o)

The planned community consultations with people with disabilities are acknowledged. But the participation of people with disabilities in developing the 2007 Summit idea of a no-fault, universal disability insurance scheme, to its working reports or in contribution to framing the study's terms of reference has evidently largely been absent, at best grossly unbalanced in favour of other interests than those of Australians with disabilities. Involvement in process to this point has been effectively restricted to a select group of experts, including in medical, finance, disability service administration, and competition policy. The effect is that people with disabilities, without amended terms, can only be consulted within the present terms of reference, which exclude vital aspects that are in this interest, in a scheme that may affect their lives for decades.

In the interest of an NDIS that will operate in the best interests of people with disabilities, and to be seen as an enquiry that deserves the trust of people with disabilities, this unbalance must be redressed.The currently non-participative process may be a breach of the UN Convention.

We propose that a working group, representative of people with disabilities work with government to urgently amend the current terms of reference, ensuring the vital issues of interest to people disabilities will be addressed in the enquiry, that they be represented at a level on the Independent Panel that is proportionate to them as the group representing the proper central interest for an NDIS. This includes diversity of disability representation, and ensuring them a powerful presence on this Panel.

At all stages of the enquiry it should be conducted in a way which reaches out to as many people with disabilities as possible, actively supports their contributions, and facilitates such contributions to be made creatively, including through online forums and submissions, telephone, TTY, and so on.

The Un Conventionon Rights of People With Disabilities expresses: Concern[ed] that, despite these various instruments and undertakings, persons with disabilities continue to face barriers in their participation as equal members of society and violations of their human rights in all parts of the world. (Preamble, k.)

An alternative body of enquiry

10) The terms of reference must be amended to reduce an economic focus on the inquiry and maximise a focus on the fundamental needs of people with disabilities. One way is to acknowledge this focus in the appointed body of inquiry, the Productivity Commission, in the terms of reference together with a commitment to apply a truly wholistic view of disability, in part achieved through the other amendments, proposed here.

11) The alternative position is to appoint a more appropriate body of inquiry at this stage. Whereas preferred, we are not in a position to suggest what body this should be, nor assess the feasibility of such a change at this stage.

By its charter, track record and name, the Productivity Commission's feasibility study is based on an economic look at life. However, Australians with disabilities must live a full life to flourish, not just as a consumer, service user or worker. Part of the disabling values towards them originate in such a worldview. But the NDIS campaign and DIG panel have been dominated with interests operate within that economic value framework.

Towards Good Lives requests the Minister ensure that the economic focus of, and on, life, held by the Productivity Commission, and that of its current Panel will be removed by either finding a more appropriate research body to conduct this study, or at least by safeguards and amendments to the terms of reference and meaningful participation by disability representatives in guiding the study.

Separation of interests

12) The nature and substance of the interests of people with disabilities; carers/families; disability services; and government must be clearly stated in the terms of reference and a commitment to the primacy of that of the first group must be made in the preamble to the terms of reference.

The interests of Australians with disabilities and that of government, service providers and carers are conflated in all NDIS material, including in the study's terms of reference. Yet the four interests of people with disabilities; government; disability services; and carers/families also conflict, where Australians with disabilities have the least power to influence the NDIS process towards framing terms of reference or end-goal. All these interests play a legitimate role, and a compromise may need to be struck, but people with disabilities must come first.

One way of redressing this balance, is to actually state what the different interests are. We call for transparency in making these interests explicit in the preamble to the terms of reference and ensure that the power balance is shifted towards the primary interest group: Australians with disabilities.

Independent evaluation of NDIS

13) The terms of reference must explicitly state that the inquiry will examine the most appropriate independent evaluation and review mechanisms for NDIS.

There is reference to 'prudential' arrangements in governance of an NDIS in the terms of reference. Perhaps this refers to evaluation and review mechanisms of an NDIS itself. Perhaps not. We need clarity about such an important provision. Certainly clarity is there for examination of 'review' and assessment of people with disabilities, for NDIS.

Examination of appropriate models

 14) The appropriateness of Medicare and the national superannuation scheme as models for an NDIS, must be examined in the terms of reference.

Medicare and Superannuation are frequently mentioned as models for an NDI in DIG report and elsewhere. But we all know how these can go very wrong in our lives. Yet there are no terms of reference that seek to examine the appropriateness and resilience of these as models for an NDIS.

Notes:

"An NDIS would transform the way we think about disability, moving it from a welfare and charity issue to a risk and insurance issue” (Bonehady, B. (2009). Where is our outrage. Link Magazine, 18,5, p27.)

Towards Good Lives reserves the right to amend this document as a result of further developments or helpful feedback.

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