A Bill for an Act to establish a National Disability Insurance Scheme and, for related purposes
Submission to the Senate Standing Committees on Community Affairs
Part A
Submission to Senate Standing Committees on Community Affairs
Annex 2: The Auditor
- Attachment A: Letter from NSW Assistant Auditor Rob Mathie, dated 5th July 2012 (Image1.JPG)
- Attachment B: Email to Treasurer, the Hon. Mike Baird MP, dated 26 July 2012 (Providing funds to allow the Auditor General to prioritize projects in 2013)
- Attachment C: Response from the Treasurer, dated 3 September 2012 (Mike Baird Auditor)
- Attachment D: Letter to Mr Mathie, dated 17 September 2012
Page 2
Annex 3: The
Exhibit 1: RE: Inquiry regarding my submission - sent by email 12
Parliamentary
April 2012 - Inquiry into Outsourcing of Community Services
Committee
(Email sent 11th July 2012)
Annex 4: The National
Disability Insurance
Scheme (NDIS)
Item 1: Response to the Issues Paper – 1st submission to the
Productivity Commission’s Disability Care and Support Inquiry
(unedited version)
Item 2: Briefing for Minister for Disability Services, the Hon.
Andrew Constance MP
Annex 5: The “problem”
that is programmatic
funding
-
Letter to the Secretary of the Federal Department of Human Services, 14 September 2012 (Letter to Secretary) 2. Email “Complaint about Centrelink” to the Commonwealth Ombudsman 3. Letter from Centrelink restoring my mobility allowance, dated 21 September 2012 4. Emails to and from SEDS relating to point 3 (all emails titled “Centrelink” or “Centrelink blinks”) 5. Response from the Commonwealth Ombudsman (Commonwealth Ombudsman 1 and 2) 6. Letter to Lisa Paul, Secretary of the Commonwealth Department of Employment and Workplace Relations 7. SEDS declines to meet with me for continuing job seeking support (see email entitled “Declined: SEDS meetings and contrast this with all emails with “meeting” in their title) Addendum My email exchanges with Bronwyn Scott of Enable NSW with related media articles: “Funding feeds profits over aged care” - Australian Broadcasting Corporation (ABC), Broadcast: 16/08/2012, Reporter: Sally Sara “Parents angry over disability product price gouging” – ABC AM Program (Brisbane), Matt Wordsworth, Updated July 16, 2011 15:42:27
OTHER MATERIAL
Part B Addendum A1: Submission to the NFP Tax Concession Working Group Addendum A2: Email exchange with Phil Harvey of Prime Minister and Cabinet 3 December 2012, regarding the Sydney consultations concerning the establishment of the ACNC (the attachment referred to in my email is Appendix 1 in Annex 1, above) Part C Letter from the Hon. David Ipp AO QC (ICAC Commissioner) enclosing ICAC’s Position Paper on Funding NGO Delivery of Human Services in NSW: A Period of Transition, December 2012
Page 3
Adam Johnston Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 Australia community.affairs.sen@aph.gov.au
deeply concerned about this proposed scheme.
Dear Sir,
Submission: A Bill for an Act to establish a National Disability Insurance Scheme and, for related purposes
HavingbeenadmonishedbythisHolyOffice(theInquisition)entirelyto abandonthefalseopinionthattheSunwasthecentreoftheuniverseand immovable,andthattheEarthwasnotthecentreofthesameandthatit moved.Iabjurewithasincereheartandunfeignedfaith,Icurseanddetest thesaiderrorsandheresies,andgenerallyallandeveryerrorandsect contrarytotheHolyCatholicChurch. - Galileo Galilei (1564-1642) Italian astronomer, mathematician1
As someone with cerebral palsy and confined to a wheelchair, many of the Committee members will probably assume my enthusiastic support for a National Disability Insurance Scheme. (NDIS) You would be wrong, as are many in the disability sector who have sought to “convert” me to the merits of this somehow “miraculous” reform. Some may now think of me as a Galileo-style heretic, but if they are expecting words of mea culpa from me, they will be left waiting and wanting.
Additionally, I caution the Committee; look with some scepticism upon the army of disability lobbyists who will seek to appear before you with their careful crafted and market-tested stories of deprivation and suffering. While some of it will be true, a fair proportion of the “suffering” is generated by service providers themselves – their processes of application, assessment and, a general reluctance to consider the client with a disability as anything more than an “extra in their own life”. Meanwhile, family members, carers or significant others are dismissed as ill-informed nuisances who should get out of the way and allow allegedly professional social workers and case managers to deal with matters.
For most of my life, one has interacted with government departments like Centrelink and, the Department of Ageing, Disability and Homecare in NSW. 2 I have also worked in the NSW public sector.3 With this combined experience as both former bureaucrat and service recipient I feel deeply concerned about this proposed scheme.
Page 4
competent to comment on the Bill for an Act to establish a National Disability Insurance Scheme and, for related purposes (the Bill). The first and most important point is that this is a Bill like so many others. It does no more and no less than to create yet another bureaucracy. And in many respects, the drafting of the Bill is desultory; all points which demonstrate the distance between the Prime Minister’s flowery Second Reading Speech rhetoric and, the sad reality of the Bill’s true terms.
- Read the Words
This Bill shows its true colours from Clause 6 when it declares the NDIS Agency (the Agency) may provide support or assistance. Note carefully that the Government has judiciously avoided words like shall or must; after all, such words would impose positive legal obligations on the Agency to actually provide support and assistance. Another noticeable Clause is 205; subparagraph (1) states that Bill (Act) binds the Crown. Subparagraph (2) goes on to void the preceding clause of any real significance, as the Crown cannot be held liable for an offence.
In this light, the Bill can have a plethora of high minded Objects, but unless the Crown truly binds itself and its Agency4 to the terms of the Bill, and can be held legally accountable for its conduct, how much do the Bill’s Objects really mean? In my opinion, not much, which may explain why the Explanatory Memorandum’s (EM) discussion of Clause 6 is notable for one thing; its brevity. And it is not as if the Government does not know the legal significance of a word such as shall; it clearly does, having used just that phrase in numerous other places. In particular, while the CEO is required to facilitate the preparation of participants’ plans under Clause 32, a participant or their Guardian are legally obliged to provide information under Clause 33, as well as Clauses 51 – 57; under threat of penalty by virtue of Clause 57.
And the detail which must be disclosed should not go unremarked. Clause 33 obliges a participant to provide a sweeping canvas of every aspect of their life to the Agency. Personally, I find this clause invasive and intrusive, almost to the point of legislatively sanctioned voyeurism. Yet, the Chief Executive Officer (CEO) may require further intrusive details under Clause 36, including the participant being subject to a range of clinical tests and other assessments. No doubt, much of this information will already be held by a participant’s doctor, or other agencies they deal with, such as Centrelink. Little thought ever seems to be given in the local, State or Federal bureaucracies of our nation, as to why people must give so much of the same or similar personal information, to a range of government (and sometimes non-government organisations) on repeated occasions, to obtain the simplest of goods and services.
Here again, this Bill is consistent with a long line of public welfare forerunners. In order to receive a service, an individual and/or their family must lay themselves bare before departmental inquisitors. Privacy provisions notwithstanding, the process proposed feels very Inquisitorial and, would be a strong disincentive to making an access request; and I’m sure this will be true not just for me, but
4 While the Agency can be sued under Clause 117 (d), as this does not extend to the Crown itself, the exercise of Ministerial discretions and the issuing of strategic directions to the Board would appear to be ultra vires. In other words, it does not appear that a participant could sue the Minister regarding an adverse outcome, based on a direction issued.
While acknowledging that under Clause 125 (2) (b) that a “Ministerial statement” must not pertain to an individual (and can only be issued if host jurisdictions agree – see Clause 125 (3)), it is nonetheless true that such directions/statements will affect individuals. Participants may be able to sue the Agency on the basis of its interpretation of Ministerial statements (which still have to be consistent with the wider aims and objectives of the Bill – see Clause 125 (2) (c) (i) and (ii)), but the absence of a legal ability to argue a causal link between a Ministerial decision and an adverse individual outcome, potentially leaves vulnerable participants exposed and without redress.
Page 5
also for many others. After all, there are already enough departments and processes we are required by law to interact with, as well as divulge our sensitive personal information. For example, you only need to look at the complexity of the Social Security system (and its commensurate compliance regime) to realise how many poor and vulnerable people can end up being subject to sanctions from it, when many may not be able to comprehend what they did wrong. In particular, I put to Professor Julian Disney’s Review of the Job Seeker Compliance Regime that:
In my own situation, one often felt you needed a secretary to manage all the forms and
letters coming from Centrelink, not to mention drafting responses by a specified date, lest a
payment be cancelled. How do people who are desperately ill, or have limited literacy cope
with all of this? The short answer is: many do not.
The Review should view this question, not only from the perspective of welfare recipients,
but the cost of overall (compliance) administration. For example, does it really benefit the
Australia taxpayer to have government offices open on Christmas Eve and staff on overtime,
just to maintain a payment and reporting cycle? I suggest not, but in the rhetorical flurry of
stopping ‘welfare bludging’ and ‘social security fraud’ practical and pragmatic questions are
not asked.
My own case, which must have cost the bureaucracy hundreds of thousands of dollars in
man hours over half a year, in a dispute Centrelink ultimately lost, should stand as an
example of why reform is urgently needed. While this will not be the situation for many
people, part of the fun of any problem I encounter with government is making the
complaint. So when my (Disability Support Pension) DSP application was refused, on the
basis that one was not sufficiently disabled, I immediately appealed. The Authorised Review
Officer (ARO) upheld the original decision, finding that I was capable of work based on the
capacity test; conveniently for the department, the test relies on my theoretical capacity for
work, not the availability of actual work, nor whether any of my applications to that point
had led to job offers.5
The ARO’s decision was overruled on appeal, but it took 6 months for the matter to run its course. The same complexities apply to other bureaucracies, such as the taxation system. On November 21, 2012, the Brisbane Times observed the newly appointed Justice Patrick Keane of the High Court had said in a 2011 interview that “(opening) the Tax Act is like opening the door to a parallel universe’’.6
I submit that the Bill opens up a similar parallel universe for those of us with disabilities; one which we would all be well advised not to enter if we can avoid it. And let’s be quite clear here; the Bill may use the nomenclature of “insurance” but it is really talking about public welfare. Nowhere in the Bill do we see reference to participants as policy holders, beneficiaries, shareholders or even stakeholders. After all, most of these phrases hold clear legal and popular meanings and their use would impose well defined legal duties, as well as creating real community expectations. By contrast, a participant’s level of involvement can be narrowly defined by the CEO, who holds the discretion to accept or decline their access request by virtue of Clause 20. Equally, the payment of a
Page 6
premium by a participant, is not mentioned anywhere in the Bill. Thus, to apply basic concepts of law, where no consideration has been exchanged, there is no more than a naked, unenforceable contract; the maxim being ‘ex nudo pacto non oritur actio’ (a right of action does not arise from a naked contract).
Recommendation 1: That, if participants and their families are legally obliged to
provide information to the Agency, that the Agency be placed under a comparable
legal duty to provide support and advice in return.
Recommendation 2: That Clause 205(2) is deleted, so that the Crown cannot escape
liability for malfeasance.
Recommendation 3: That, noting the level of personal disclosure required from
individuals when making an access request, the Committee question the Transition
Agency at length about whether requiring such a level of detail is truly necessary;
and if it would actively discourage many from making access requests. In asking this,
the Committee should observe that agencies including Centrelink, the Taxation
Office, a potential participant’s current service providers and their medical
practitioner/s would already hold such information.
The Rules
The NDIS Rules are another area where healthy scepticism is required, particularly if you are anyone with experience in the disability or social welfare sector. Clause 209 (2) overrides section 14 of the Legislative Instruments Act 2003 (Cth), which constrains a Minister for issuing a legislative instrument which relies on some other instrument or document, beyond the principal Act or subordinate legislation (Regulations) under which a Minister purports to act. The EM does not give any explanation as to why the ambit of Ministerial discretion needs to be so widely drawn. However, The following subparagraph (3) states that the Minister “must have regard to the need to ensure the financial sustainability of the National Disability Insurance Scheme”. In the language used though, I see a clear pattern emerging; duties of the Minister or to the CEO are described in prescriptive, mandatory terms, while the Agency’s duties to potential participants or actual participants tend to be discretionary in nature. An example here even includes the Agency’s role in providing referrals or information about its own functions. While you would hope that in the interests of public accountability, accessibility and transparency, information would be readily available, Clauses 13 to 17 (Chapter 2) do not provide any guarantees, given the legislative language used. By contrast, I remind you of my earlier discussion of Clauses 51-57.
While not denying the importance of protecting public finances from misuse, this only serves to underline my earlier point; the NDIS is a welfare scheme and not an insurance measure. Much the
Page 7
same can be said of various disability employment initiatives established by governments of both political hues over the years. As I told this year’s Senate Inquiry into the Administration and Purchasing of Disability Employment Services in Australia:
Even when people with disabilities are employed, if they happen to be "employed" in a Special Business Enterprise (SBE), then should this be seen as 'employment'? Income to the individual is capped to ensure their retention of the disability pension and, SBE 'businesses' themselves are heavily subsidised by government. The Australian taxpayer is the one losing out, but the impression left from all this subsidised activity largely obscures that 'inconvenient truth' from view. It was this concern that led me to raise the structure of disability employment schemes (many run by charitable not-for-profits) with the Henry Tax Review.
Equally, while many not-for-profit organisations undoubtedly do much good work, for how long must they hold tax free status, be allowed to seek government grants for their works and (for the purposes of this inquiry) have their employment enterprises subsidised?12
In other words, you can call it employment for as long as you like, but if “employees” are pensioners and “businesses” rely on subsidies agreed as part of a Commonwealth/State Disability Agreement, when does language descend into nonsense? Similarly, we should not confuse insurance and welfare.
And while we are not confusing these elements, we should also not confuse legislative instruments and regulations. As such, I recommend that Clause 209 (2) be deleted and, that the Rules be made by the Board. The Rules themselves should be reconstituted as Regulations which the Minister be obliged to table in Parliament and, present to the Governor-General for the Royal Assent, unless there are subject to a motion for disallowance by either House of Parliament.
While some will argue that this adds an unnecessary degree of rigidity, I counter by saying that it really introduces a degree of accountability. Such a measure is vital, because for far too long, many decisions of government in the disability sector (not to mention a vast array of other policy areas) have avoided proper, public review. As the former Attorney General of Victoria, the Hon. Rob Hulls, observed when addressing the Centenary Sitting of the High Court in 2003:
The word 'insurance' in the National Disability Insurance Scheme is a misnomer. The NDIS would be based on insurance principles and operate as an insurance scheme, but it would not necessarily entail aspects of an insurance model such as the payment of premiums by those covered by the scheme.
The NDIS is better understood in terms of social security or as an entitlement scheme, with strict definitions assessing client need and restricting eligibility and benefits.
I commend Mr Baker’s paper and its economic and fiscal analysis to the Committee. He brings to the “NDIS debate” (which in my view has been limited) a dose of financial reality. He would also be a very able witness and I recommend you call him.
I am a member of the CIS. 12 See my submission to the Senate Inquiry into The administration and purchasing of disability employment services in Australia, hhttps://senate.aph.gov.au/submissions/comittees/viewdocument.aspx?id=a6fa4e6a-eb31-49de-bb0fc9f11849c86c as at 3 December 2012, pp. 2-3 of 68
Page 8
In our defence of the rule of the law, we must also be alert to, and alarmed by, attempts to bypass judicial scrutiny, whether it be via privative clauses or the more insidious trend towards unenforceable guidelines. In my view, any suggestion that an Executive’s “non-binding guidelines” be accepted as authoritative is dangerous terrain. Yet it is increasingly the case that we are asked the accept the legitimacy of such guidelines, whether it be in Industrial Relations, decisions concerning grants of Legal Aid, or more poignantly in the immigration area.
In submissions over many years, I have quoted Mr Hulls with approval and increasing urgency. Almost by routine these days, governments are putting all sorts of decisions beyond review, be this review administrative, judicial or parliamentary. People, particularly those who are vulnerable or dependent, are being denuded of elements of their citizenship and their access to democratic institutions, when the impact of guidelines cannot be appealed to courts, tribunals or parliaments. This is a topic I have raised repeatedly with a number of inquiries.14 Yet, this lesson never seems to be heard or learned and, the Bill is another fine example of the same mistake being made again.
The Hon. Rob Hulls, Ceremonial - Special Sitting at Melbourne - Centenary of High Court of Australia [2003] HCATrans 406 (6 October 2003), available at http://www.austlii.edu.au/cgi-bin/disp.pl/au/other/HCATrans/2003/406.html as at 29 March 2012
For example see the NSW Parliament’s Inquiry into the Outsourcing of Community Services, whose details can be obtained from http://www.parliament.nsw.gov.au/prod/parlment/committee.nsf/0/C6782566488D8117CA2579B90006B615 as at 24 December 2012. I note that the Legislative Assembly’s Community Services Committee decided not to publish my submission (Submission 3). It is acknowledged in my submission in response to a Discussion Paper released by the NSW Independent Commission Against Corruption (ICAC) (ICAC’s Press Release: ICAC seeks comment on corruption risk issues relating to NGO delivery of human services in NSW - Tuesday 28 August 2012 http://www.icac.nsw.gov.au/media-centre/media-releases/article/4127 as at 24 December 2012) that the Parliamentary Committee’s reticence around publication may have been around my critique of a particular NGO service provider.
However, this is indicative of a much wider malaise within government, the media and civil society more generally; the view appears to hold that “Thou shalt not criticise the charitable sector, because it is staffed by such wonderful people doing marvellous things that surely such Saintly types would not be doing anything improper?” While I do not deny that many big-hearted and well-intentioned people enter the so-called Third Sector for the right reasons, this cannot be taken to be universal. I see a worrying parallel with the store many people used to place in the authority and apparent trustworthiness of Catholic priests; look where this has brought us: e.g.: Establishment of the Royal Commission into child sexual abuse, Commonwealth Attorney-General’s Department http://www.ag.gov.au/About/RoyalCommissions/Pages/default.aspx as at 24 December 2012. Less than a decade ago perhaps, many Australians may have felt the allegations and abuse the Commission is set to hear were incredible and unbelievable.
I am determined to do whatever is within my power to ensure the same does not happen in the disability sector. Yet, if the Government succeeds in herding people with disabilities under the Agency, then you bring together the three elements of a large, unwieldy bureaucratic system, third sector/charitable service providers and, a vulnerable community of need. Add just a few people of malicious intent and, you have the makings of another heart-wrenching, hideous and horrendous Royal Commission of the future.
This is why I bring to this Inquiry as “Enclosures” my prior comments to these other bodies. The Legislative Assembly has had my submission since 12 April 2012 (submissions closed 4 May 2012 and the final day of public hearings were held on 17 September 2012); meanwhile, I provided my submission to ICAC as at 5 October 2012. Neither body has yet issued a further report, discussion paper or the like. While appreciating that ICAC has a number of other major investigations on its books at the moment, I am concerned the NDIS will be established absent any input from the Legislative Committee’s report or that of the ICAC. This would be extremely unfortunate. If legally and procedurally possible, I would recommend this Committee invite these other bodies to give evidence, as they are running related inquiries and, their insights would be beneficial.
Recommendation
Page 9
Recommendation 4: That (in the interest of accountability and transparency) the NDIS Rules be drafted by the Board, in the form of Regulations, which the Minister is then required to table in Parliament.
Recommendation 5: That any agreements made between the Agency and Registered Providers be public, legally enforceable documents, which are not based on non-justiciable, unenforceable guidelines.
Recommendation 6: That each individual participant is made (in the Bill’s terms) a full, legal party/partner in any agreements relating to care services received by them and, that non-justiciable, unenforceable guidelines not be used.
Recommendation 7: That the Committee consider inviting representatives of the NSW Independent Commission Against Corruption, representatives of the NSW Legislative Assembly Committee on Community Services and, Mr Andrew Baker of the Centre for Independent Studies, to appear before you.
The Board
It is noteworthy how the Minister holds a wide ambit to both appoint the Board and give it directions as to alleged “strategic matters”.15 And while the Minister must also consult with host jurisdictions as to the appointment of Board members and a Chair, the Minister has the final decision on board appointments, by virtue of Clause 127(1)16 of the Bill.
A truly independent Board (and Agency)17 would:
- Call for public nominations for Board Members;
- Have shareholders or policy holders, who would have voting rights at the Annual General Meeting to elect and/or dismiss Board members who stood for election, as opposed to mere participants;
Further, I have raised similar concerns with the Department of Prime Minister and Cabinet, during consultations about the establishment of the Australian Charities and Not-For-Profitss Commission (ACNC). Refer to Part 2, Addendums A1 and A2. In my view, giving charities and their donor tax breaks (while all governments also hand out various public grants to not-for-profits) is highly questionable from a fiscal standpoint. Also, as I advise Mr Harvey in Addendum A2, it is far from certain that many service recipients/clients/stakeholders are “masters of their own support destiny.” In my experience, you sometimes have to be determined to the point of quarrelsome, to emphasise to some providers that they agreed to a certain outcome and you insist on delivery. Many are not so willing to complain for fear of “rocking the boat” and losing services altogether
-
Include seats on the Board for participant/shareholder members;
-
Where appropriate, some policy holders would have their policies subsidised, in situations where criteria were clearly met, but a person’s fixed income (or other financial hardship) made the payment of a premium unreasonable. However, in supporting some level of individual contribution/premium, I would never want to see the family home become part of an assets test. Such an option may be explored by either the current or a future Government in its attempts to fund the NDIS, but the Australian people have made their view on such proposals crystal clear;
You should not assume that those with “experience or knowledge (in)…the provision or use of disability services” will necessarily have a view which accords with what many people with disabilities (and their families) actually aspire to. In making this point, I draw your attention to Annex 4, Item 1, p. 3. Here, I discuss my unfortunate experience with an attendant care provider, alleged there to promote my best interests. The fact that her actions reduced my mother to tears and provoked me to fury never appeared to make her review her approach.
Additionally, please refer to Annex 1 of the enclosed materials. These, in the broad, show the real differences between what many not-for-profit/charitable organisation claim they achieve, and what they actually do (and how they do it) in practice. While there is not necessarily a wide degree of variance in every case, I have had enough worrying experiences as a client/end service user and, as a former Board Director of a major NSW charity, to prompt me to write to ICAC (see Part 1), as well as the NSW State Auditor and State Treasurer (see Annex 2) in relation to third sector governance and financial probity issues. However, it is because the NSW Legislative Assembly has determined not to publish my submission (see Annex 3), and I have not received anything from ICAC (other than a series of automatically generated email acknowledgements) that I must ask you to hold the information that comes with my submission (that marked in yellow on the Table of Contents) in confidence. I nonetheless believe it is important for Senators to see the documentation, to put my submission in context.
For example see Julian Drape, People should pay for aged care: survey, Date: October 23, 2012, Sydney Morning Herald, http://news.smh.com.au/breaking-news-national/people-should-pay-for-aged-care-survey- 20121023-28318.html as at 5 January 2013. The headline is a little misleading, because as with many surveys, while there was initial support for a “user pays” principle, this drops away on further examination. Critically, The Gillard government has pledged the family home will continue to be exempted from wealth tests. (The Menzies-Nous) survey backs that approach, with 77 per cent of respondents saying individuals should not have to sell their house to pay for care. Ms McFee (from Nous) says people want to be looked after in their own home rather than aged-care facilities. Some 91 per cent believe the government should invest more on that front. Satisfaction rates for residential care are “very low”, Ms McFee said.
I would submit that much the same can be said for people with disability and their families, where they would prefer care to take place and, their view of residential care. In this respect, please also note the submission to the NSW Legislative Assembly in Annex 1. In particular, I draw your attention to footnote 46 on pages 14 and 15 of that document, where during my tenure on a charity board, a most unfortunate case of fraud, relating to a group home, was drawn to our attention.
While these events can occur in a variety of contexts, they underline my fear of Registered Providers under the Bill being made up of not-for-profit agencies, and predominantly large not-for-profits. I worry about vulnerable clients and their ability to complain, when things go wrong, their personal effects are misused or stolen, or they themselves feel they have been mistreated. This is why my submission to the Legislative Assembly draws deeply on Sir Robert Menzies’ philosophy around the role of the State (p.5 and 6 of 21), Mr Hulls’ earlier cited comments around the use of non-justiciable guidelines (p.8 of 21) and my call for parliamentarians to “Patriation” all guidelines back to Parliament as Regulations (p.11 of 21). Then, those who live under their remit will have a clear right of redress; which should be right of any citizen - Ubi Jus Ibi Remedium: “where there is a right there is a remedy” http://definitions.uslegal.com/u/ubi-jus-ibi-remEDIUM/ as at 6 January 2013.
I do not believe that the “reviewable decisions provisions” under Clause 6 of the Bill can be taken as giving participants or their families redress in many situations. Clause 6 deals with a discrete range of decisions the
Page 11
- Allow providers who become “Registered Providers” to become shareholders of the Agency, so long as voting was based on the principle of one vote, one value. Importantly however, the legislation should ensure that providers can never out-vote individual “shareholders;“
Agency CEO can make; it does not deal with any of the thousands of decisions registered providers may make every day, based on guidelines. These will be the decisions that affect participants and their families most directly, but they are not covered by the clause. It is to be hoped that the Agency would require registered providers to have published complaint handling procedures and, that there would be monitoring in place to ensure these procedures were followed consistently.
In saying this, I would not want to place such a regulatory burden on individuals who sought to become registered providers. Indeed, many of individuals may be family members and, there is evidence that families can be effectively funded to provide care. For example:
20 . J Pediatr Rehabil Med. 2012 Jan 1;5(3):187-95.
In-home supportive services for individuals with cerebral palsy in California.
Houtrow A, Kang T, Newcomer R.
Department of Physical Medicine and Rehabilitation, University of Pittsburgh, Pittsburgh, PA, USA.
Introduction: Individuals with cerebral palsy (CP) may require personal assistance services for optimal
functioning. The primary goal of this project is to determine if differences in health services exist
between individuals with CP with family versus non-family member paid personal assistance
providers. The secondary goal is to describe the population of children and non-elderly adults with CP
receiving In-Home Supportive Services (IHSS) and determine their health care costs compared to
other IHSS recipients.
Methods: Administrative data from the California Departments of Health and Human Services, Social
Services and Developmental Services were linked and de-identified to provide information about
individuals receiving IHSS in California in 2005. Recipients with CP were characterized and compared
by age. Then to determine the factors associated with hospital use and emergency room (ER) use for
IHSS recipients with CP adjusted odds were calculated. Monthly expenditures were calculated from
claims data.
Results: 2.3% of all IHSS recipients in 2005 had CP of which 46% were children. 59% of recipients with
CP have a parent as their paid provider. The presence of other medical diagnoses was the only
factor associated with increased adjusted odds of hospital and ER use for both child-aged and non-
elderly adult recipients with CP. Functional limitations and provider type were not associated with
increased odds of health care utilization. Monthly health care expenditures for recipients with CP
were $1000 higher than for other IHSS recipients. Conclusions:∼ Having a parent as the IHSS provider was not associated with difference in health service
utilization. This finding supports the policy of allowing parents to be paid providers.
PMID: 23023251 [PubMed - in process]
(Taken from: Cerebral Palsy Alliance, Cerebral Palsy Research News, Monday 8 October 2012, p.10 of
11 -Cerebral Palsy Alliance - PO Box 184 Brookvale NSW 2100 Australia | T +61 2 9479 7200 |
www.cerebralpalsy.org.au)
To me, this in large part endorses the position I took in response to the Issues Paper released by the Productivity Commission during the Disability Care and Support Inquiry. In general, I argued against the establishment of a central agency – see http://www.pc.gov.au/__data/assets/pdf_file/0009/99486/sub0055.pdf as at 7 January 2013. Also, refer to Annex 4, Item 1, for an unedited version of the same submission. Many charities will not want to highlight such evidence as that from California, as it undermines their view of themselves as central to a professionalised care and advocacy framework, which was making no secret of its wish for more funding before the Productivity Commission; see for example, my second submission to the Disability Care inquiry http://www.pc.gov.au/__data/assets/pdf_file/0016/100726/sub0186.pdf as 9 January 2013, pp. 1-2
Page 12
- Table its Annual Report in the Commonwealth Parliament and, the Parliaments of all host jurisdictions
I would also recommend the establishment of a Parliamentary Joint Committee, much the same as exists in relation to Part 4A of the NSW Ombudsman Act 1974.
The Committee overseeing the Bill should also include representatives from host jurisdictions as well as the Commonwealth and, all participating jurisdictions should pass mirroring legislation to facilitate this outcome.
The Committee’s presence, in my view, is an improvement on the proposed Ministerial Council, in terms of accountability and transparency. Also, allowing the Agency to operate clearly as a statutory corporation (like Qantas or Telstra) with shareholders, would further limit (indeed, perhaps eliminate) the need for Ministerial discretion and interventions. Equally, despite the reforms recommended above, the Agency would still be partially dependent on Government funding, so a triennial funding arrangement, much like that of the Australian Broadcasting Corporation (ABC),
would provide a degree of funding certainty and security.
Additionally, Part VI of the Australian Broadcasting Act 1983 gives the ABC a wider ambit to seek funding, outside the limits of grants from the Commonwealth. Given the limits on both Commonwealth and State funding (currently, and in the future), I believe it would be prudent for the Agency to have funding options similar to the ABC. Indeed, to underline what should be greater functional, governance and financial independence from the Commonwealth and host jurisdictions, the Agency should be renamed a Corporation and its operations subject to the Corporations Act 2001, while retaining the audit provisions of the CAC Act.
Fostering competition
In the disability sector, competition is not the first word that necessarily comes to mind. This is unfortunate, because many people with disabilities and their families can face unreasonable out-of-pocket costs (or, at the very least, inefficient use of limited public subsidies and grants). Markets for goods and services tend to be dominated by a few suppliers and distributors, while medical or other assessments (which are often required in order to receive goods and services), tend to corral you into dealing with the same suppliers. And, I admit, that while sometimes you need specialist advice, this is not always the case.
Page 13
For all of these reasons, it is appropriate that the Agency be redesignated as a corporation, clearly subject to corporate law and competition policy. It is particularly important that the Australian Competition and Consumer Commission (ACCC) be able to look at all Agency operations, to guard against two adverse and unintended consequences. These are:
a. All care providers seeking to become registered providers and, implicitly (or explicitly) requiring their clients to join the Agency scheme in order to continue receiving any support services. This should not happen, as it clear from Clause 18 that a person may make an access request. As a consequence, a person with a disability may examine the scheme and decide not to become a participant. They should not be disadvantaged for making such a choice and, being unable to find support services as a result. b. Access and Registration requirements being overly bureaucratic and prescriptive. This should be avoided, so that individuals and families can be funded to provide care, where families and participants agree to do this.24
In short, the Agency should never be allowed to become monopolistic in its operation. This was one of the key fears which drove me to seek a meeting with NSW Disability Services Minister the Hon. Andrew Constance MP during October 2011 and my providing him with the attached Ministerial Briefing note.25 However, if the Agency has to compete in a competitive marketplace, is a corporation obliged to follow competition policy and is never allowed to “cover the field” in terms of either regulating or providing goods and services for people with disabilities, then this will do something to address the potential power imbalance between individuals and the Agency.
Recommendation 8: That the Board be reconstituted and be subject to the Corporations Act 2001.
Recommendation 9: That every participant becomes a company shareholder and that the Agency be formally redesignated ‘a Corporation,’ with the exceptions that:
a. Section 8 of the CAC Act continue to apply to both the Agency and Registered Providers under the Bill; b. A Parliamentary Joint Committee also be established to oversee the Agency’s operation; c. The Agency be given the power to seek funding from various sources, in a similar fashion to Part VI of the Australian Broadcasting Act 1983; d. Where appropriate, the Agency is able to levy premiums on participants, or provide subsidies to participants on low or fixed incomes.
Recommendation 10: That competition policies and principles be applied to the Agency’s operation and that the ACCC be able to inquire into the Agency’s actions as the Commission sees fit. The ACCC and related regulators should work to ensure that the Agency does not become monopolistic in its operation.
You will note, with reference to Part 1 (pp. 17-18) and “Addendum” that I am pressing the issue of equipment provision and cost. 24 Refer to the Californian research cited in footnote 19, above. 25 See Annex 4, Item 2. In my view, many of the questions I raised in the 2011 Briefing note remain unanswered by this Bill. In particular, the Bill establishes a Transition Agency and so called “Launch sites” (Chapter 6, Part 1) while the EM states that the financial impact of the measure to the Commonwealth of $1 billion over 4 years (See, Explanatory Memorandum, p.3 of 102). Under Clause 208 of the Bill, a review will be conducted at the second anniversary of when the Agency was empowered to receive access requests. While a review of operational effectiveness is welcome, the potential responses of the Ministerial Council to the review’s findings, introduces a real level of political uncertainty for all participants and their families. It is also unfortunate that that the Independent Advisory Council (IAC) has no formal role in the review process. The IAC should be referred to (and consulted) alongside the Ministerial Council.
Recommendation
Page 14
Recommendation 11: That the Independent Advisory Council (IAC) be formally consulted during the Bill’s review, under Clause 208.
Recommendation 12: That where family members agree, they be funded directly, to care for relatives with disabilities.
- Legal issues
I am disappointed by Clauses 104 and 105. Even while recognising that they are reasonable as revenue protection measures, and that there is a degree of protection for participants under Clause 104 (3), there is still a great onus being placed on individuals. These individuals (and their families) will have come through a truly catastrophic incident in their lives and, many will not be emotionally able to contemplate litigation in the short term, or perhaps ever.
The Agency should be prepared to take legal action on participants’ behalf, with their consent. The Agency should equally be prepared to indemnify individual participants against loss, should a damages claim (which the Agency insists on pursuing) fail. The Bill should specify that the CEO cannot delegate these decisions to any other officer, given their importance to the Agency and the individual participant alike. Clause 104 (4) should also be expanded to read:
(4) The CEO must not give a notice under subsection (2) requiring a participant or prospective participant to take action to claim or obtain compensation unless the CEO is satisfied that the participant or prospective participant has reasonable prospects of success in claiming or obtaining the compensation and the CEO can demonstrate this belief via the receipt of formal legal advice.
Recommendation 13: That the onus for initiating legal action be placed on the Agency, rather than the individual participant.
- Participant plans
In the area of disability there are any number of “plans” and “programs” that one seems to have applied to them. Sometimes these are mandatory (such as minimum activity/attendance standards when searching for work); at other times, these are voluntary. In any event, I note these comments from Living Life My Way - Putting people with a disability at the centre of decision making (Outcomes of state-wide consultations - August – October 2011):
Some people with a physical disability expressed the view that having a ‘life plan’ should not be a prerequisite for accessing services. For example, people questioned the need for a person with a physical disability to prepare a plan in order to receive funding for essential supports. For this group, targeted service planning may be more appropriate to address particular support needs. The range of views expressed in the consultation sessions reinforced the importance of a flexible approach to planning that meets the needs of the
In any case, many of the plans and programs can become very complex and difficult to cope with, even as the recipient of services. For example, see Annex 5; this relates to my experience dealing with Centrelink and a Disability Employment Services provider, whose services I have now discontinued, after I was dissatisfied with their handling of an administrative problem.
Page 15
person. Flexibility extends to the scope and extent of a plan, the range of things that might
be able to be included and the need to change a plan in response to changing
circumstances.27
I acknowledge that there was also support for plans and planners in certain circumstances,28 but how these plans end up working in practice is a vitally important question. Noting the number of times participants plans are mentioned in the Bill alongside the NDIS Rules (and the Rules are mentioned generally),29 I would again emphasise my preference for the Rules to become Regulations to be tabled in Parliament, where they can be fully and publicly scrutinised.
Recommendation 13: That participant plans not be made too onerous, detailed or
prescriptive.
5. The missed opportunity
It is important to point to the opportunity costs of policy decisions that are made. This was a point taken up with the Treasury in my Pre-Budget Submission for 2012-2013,30 where I argued for more funding to go to the science and medical research that will ultimately cure my disability and those of many others. This should be a bipartisan31 cause worthy of support, of equivalent if not greater priority, than the NDIS.
After all, as I told the Treasury:
> I find it amazing that organisations like the Productivity Commission can content themselves
talking about disability care and aged care. But, as someone with a disability, I want less to
be cared for and more to be cured. This is increasingly possible with stem cell and related
technologies. Therefore, the question will and should be increasingly asked by people with
disabilities and their families: why should we settle for care if we can have cure? An initial
public investment would be speedily returned as those who were on welfare truly became
well. It may well also encourage gifted Australian scientists like Alan Trounson to return
home and continue their work. Certainly, the people and government of California showed
their enlightened policy stance when they invited Dr Trounson to work there, and Australia
27 NSW Department of Ageing, Disability and Homecare, Living Life My Way - Putting people with a disability at the centre of decision making (Outcomes of statewide consultations), August – October 2011, p.11 of 46 http://www.adhc.nsw.gov.au/__data/assets/file/0007/253843/1149_ADHC_PCA_ConsultationReport_WEB.pd f as at 10 January 2013 28 See ibid, pp. 11-13 of 40; and note the sub-headings: 2.4 Who should planning include?, 2.5 Value of planners, 2.6 Support to participate in planning. 29 For example, see Clause 17, Clause 21, Clause 22, Clause 23, Clause 27, Clause 35, Clause 67, Clause 73, Clause 93, Clause 209, etcetera 30 See Annex 1, Appendix 7 31 However, is bipartisanship all it is cracked up to be? This Bill is being waved through Parliament with limited scrutiny because all sides of politics want to be seen to be in furious agreement. But to adopt the catch-cry of John Della Bosca’s somewhat nauseating pro-NDIS campaign “Every Australian Counts” is this not a misnomer? If you truly count, wouldn’t you be at the heart of a political campaign where ideas, values, principles and ideologies were applied and contested. By contrast, when anything is said of the NDIS Bill people both inside and outside Parliament want to be seen as virtuous for not applying their political beliefs to any assessment of the Bill. Rather than suggesting this demonstrates that people with disabilities matter to Australian society, I would offer it as proof that we do not. Indeed, we matter so little, no-one wants to entertain a political argument.
Page 16
lost him, due to our unnecessarily restrictive stem cell laws. The Government should amend these laws, and increase spending on science and research 1000 fold.32
to me, this technology is where the future is, whereas the social welfare focus of the ndis is largely a reorganisation and reconfiguration of existing policies, rather than any noteworthy innovation. As such, it should be regarded only as an interim, flawed measure, should the parliament choose to proceed with it.33
ultimately, i want to see a world where disability is no longer part of the human condition. clearly, we are not achieving this outcome under current policy settings, with a report in the sydney morning herald citing world health organisation findings that:
the proportion of disabled people is rising and now stands at 1 billion, accounting for 15 per
cent of the world's population, according to the first official global report on disability.
an ageing population and an increase in chronic health conditions, such as cardiovascular
and respiratory diseases, mean the proportion of people with disabilities has grown from an
estimated 10 per cent in the 1970s.34
Is this the best we can hope for? Increasing numbers in declining health and inversely growing dependence for longer? What is the point of increasing your life expectancy, if you are going to be shadowed by chronic illness for longer and longer? A similar point can be made by those, like me, who have experienced lifelong disability. A participant in the living life my way consultation process almost got it right when they said:
We need more freedom to live our lives the way we want to. If we want to study, work, or if
we can’t do either, we should be encouraged with financial and physical support to lead lives
as fulfilling as possible. Just surviving day to day is hard for some of us. We need reliable
support to have reasons to survive for; a future to strive for.35
While acknowledging that the “support” called for by this person is in the realm of goods and services, I submit that the best support anyone can receive is the clinical application of scientific research to eliminate disabling ailments. This represents a distinct shift in my view; everyone goes through their own “bullet proof adolescent naivety”. Mine saw me believing nothing was impossible and my cerebral palsy was little more than that fold in the rug you didn’t see and, tripped over it in haste every so often. And, it is true to say i’ve landed on my face, both literally and metaphorically more than a few times.
Nonetheless, one has been luckier than most, mainly thanks to tenacious parents who believed in my education (when many in the “disability sector” did not). This opened doors to tertiary education and employment. It also presented opportunities to attend seminars and conferences, most notably the visit by the late Christopher Reeve to Darling Harbour, accompanied by his physician Dr Wise
Page 17
Young. From this point on it was clear that disability did not have to be permanent and, I have unapologetically campaigned on that basis ever since.
Yet, despite all the opportunity for science to deliver cures for many disabilities in the medium term, here we are setting up a lifelong disability welfare scheme. More importantly, we are settling for continued dependence ahead of cures. To say that none of this makes sense to me is the understatement of the new century. To draw an historic analogy, US President John F. Kennedy did not tell Congress that winning the space race meant slinging three men around the Earth in a space capsule a few times. As we all know, he said they had to go to the Moon and be returned safely to the Earth. Continuing the analogy, the NDIS is the “Earth orbit” policy setting while investing in scientific research is the Moon walk policy setting.
To give the argument a uniquely Australian flavour, here is a famous cartoon from The Bulletin in 1949:
36 For example, see my submission - Provisions of the Research Involving Embryos and Prohibition of Human Cloning Bill 2002 http://www.aph.gov.au/Senate/committee/clac_ctte/completed_inquiries/2002- 04/emb_cloning/submissions/sub1074.doc; also see Senate Community Affairs Committee inquiry into the Somatic Cell Nuclear Transfer (SCNT) and Related Research Amendment Bill 2006 http://www.aph.gov.au/Senate/committee/clac_ctte/completed_inquiries/2004- 07/leg_response_lockhart_review/submissions/sub53.pdf; also see Legislation Review - National Health and Medical Research Council http://www.google.com.au/url?sa=t&rct=j&q=%22adam%20johnston%22%20stem%20cell%20lockhart&sourc e=web&cd=1&ved=0CC8QFjAA&url=https%3A%2F%2Flegislationreview.nhmrc.gov.au%2Fsites%2Fdefault%2Ff iles%2Fsubmissions%2F298%2520- %2520Adam%2520Johnston%2520Dear%2520Review%2520Committee.doc&ei=GuT0UIiNJcrpkgXs0YGABw&u sg=AFQjCNHHAslCdwuHdXb3_OUHa5Cq5hv2Tw as at 15 January 2013
37 See Addendum A1, pp. 2-3 of 4, where I relay my discussion with the Productivity Commission about putting greater resources towards scientific research.
38 1949 election cartoon, Going My Way? by Ted Scorfield, The Bulletin, November 1949, http://moadoph.gov.au/collection/the-building/events/ as at 16 January 2013
Page 18
The NDIS looks and feels like Chifley’s 1921 socialist jalopy, while scientific advancement is akin to the free enterprise of Mr Menzies.
In conclusion, for all the reasons stated above, I do not see the NDIS as a policy advance. Rather, the Bill should be allowed to lapse and the saved funds invested in the medical research which will ultimately remove the experience of disability from the human condition. Now there’s a policy goal worth striving for!
Recommendation 14: That the Committee consider allowing the Bill to lapse and
having the saved funds invested in the medical research which will ultimately
remove the experience of disability from the human condition.
Yours faithfully,
Adam Johnston
Postscript: As I completed writing this submission, ICAC sent me its Position Paper on the Funding of Non-Government Organisations. See Commissioner Ipp’s letter in Part C and the paper at: http://www.icac.nsw.gov.au/component/docman/doc_download/4044-funding-ngo-delivery-of- human-services-in-nsw-a-period-of-transition as at 16 January 2013.