Toowoomba Intellectual Disability Support Association (TIDSA) – Input to

Senate Inquiry into the National Disability Insurance Scheme (NDIS) Bill 2012

References:

• Prime Minister’s speech moving second reading of the Bill 29 November 2012.
• www.centreforwelfarereform.org/library/by-az/fears-for-ndis.html.
• http://www.purpleorange.org.au/publications/list-of-publications The Road to NDIS: Lessons from England about Assessment and Planning.

Introduction

1. The references are considered essential reading for all who are tasked with inquiring into, planning for, or implementing the NDIS in Australia. In a nutshell, I most strongly urge all concerned to cease trying to re-invent the wheel. Rather, learn from the experiences of many countries over many years, seek out best known practices; if necessary, travel to those operating sites and observe first hand what works and what does not. Australia plans 5 trial sites - the UK offers lessons to be learnt from 150 operating sites!

2. The establishment of a National Disability Insurance Scheme Launch Transition Agency represents another very expensive (and typical) example of a top down bureaucratic design resulting in top heavy management of what will be individuals’ comparatively lightweight but vitally important entitlements. Such disproportionate management structure is not restricted to government; many non-government disability support organisations have grown into what can be depicted as inverted management triangles. Sound structures evolve from a sound base upwards.

Specifics

3. Reference B painted a very dismal, subjective and negative picture of
   

Australia’s NDIS planning to date – this is acknowledged by the author, Simon Duffy (abbreviated commentary also appeared in the Australian on November 19, 2012). Conversely, close examination of reference C, (The Road to NDIS: Lessons from England about Assessment and Planning) reveals a more positive, detailed and balanced report. 4. Input to this inquiry is referenced by page number and paragraph sequence of this report, with the extracted text shown in italics and TIDSA comment on underlined text in bold print.

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Reference Comment

p4/1st In England, there has been a growing public focus on individualised funding arrangements since the mid-1990s; progress has been fast, there have been many important achievements and there have also been mistakes.

A cost effective opportunity to learn from others mistakes.

p5/4th England’s developments in individualised funding began in 1996 with ‘Direct Payments’ which gave some people the right to turn their social care service into cash equivalent. In 2003 a further development came in the form of ‘Individual Budgets’ or ‘Personal Budgets’) which meant everyone had a budget, but with several different options for managing that budget. In 2007 the English Government committed to rolling out this new approach for all of social care and currently(2012)this has been achieved for about 30 per cent of the social care population.

Note that it has taken 5 years to implement this commitment for less than one third of the target population.

p5/5th There have been many other international example of the use individualised funding, but the English experience is interesting because progress has been (relatively) fast and because the model used has been designed to reflect earlier international experiences (especially in Northern Europe, USA and Canada). Social care is delivered through 150 local authorities who each carry lead-agency responsibilities similar to those of Australian states and territories.

If ‘relatively fast’ is to be taken literally, it could be surmised that it could take a further 10 years to fully implement the model. It is not clear whether this is simply a matter of population numbers (UK population approximately 3.5 times that of Australia) or failing enthusiasm at local levels.

P6/1st,2nd A good idea is at its most vulnerable during implementation and often the drama lies in important details. This paper aims to shed as much light as possible on what can be learned from the English experience – there will also be some reference to other international experiences. Bite the pride bullet – ask and learn from others!

For this paper we have framed the analysis by considering the mechanism or pathway by which a person navigates through the system. Before examining the NDIS design issues in relation to the pathway, it is necessary to first consider the context of outcomes.

Are we in danger of putting the cart before the horse? (see Introduction paragraph 2)

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p6/6th 4.1 The design challenge.

Typically there are stages that a person moves through when using human services, However, while it will be necessary to define a pathway by which the person can organise their relationship with the state, public service systems have a tendency to design systems where the administrative process is dominated by professional perspectives and the following progression:

p7/1st

• Gateways or referral arrangements
• Eligibility testing
• Assessment
• Planning
• Contractual agreement
• Orchestration of coordination
• Evaluation

Commendable efforts have been made by government to provide single gateway/one stop shops for information and referral guidance (Centrelink, Departments of Housing/Communities etc). However, there is one costly area of disability support which should be more proactively targeted and that is eligibility testing for Disability Support Pension (DSP). Whilst acknowledging fraud is a Centrelink priority, it is generally known that the so called ‘bad back brigade’ exists, and in unaffordable numbers – this would appear an opportune time to weed out the fraudsters.

Also costly is the requirement to conduct regular reassessments by GPs of those DSP recipients who, by definition, can never ‘get better’, for example, those living with cerebral palsy, loss of limb, sight, irreparable loss of hearing etc. A solution may be to provide purpose trained, medically qualified, independent assessors whose assessment is accurate, final and everlasting.

p7/2nd Depending on how they are designed and operated, there is a grave danger that professionally defined processes can take over the life of the person, frustrating their autonomy, limiting choice and control and undermining the very right that NDIS is there to support

Society generally, not just in the disability sector, has succumbed to the electronic ‘monkey-button-banana’ method of problem solving; if the problem doest not conform to the flat screen solution, many otherwise eligible people fall by the support wayside. A solution – delegate decision making and funding authority to much lower and more physically dispersed levels of management – remove the culture of ‘the purse strings MUST reside in Brisbane’ (in the case of Queensland).

p8/3rd Therefore, to advance and uphold principles of control and choice, it seems critically important that the NDIS operated on the assumption that people have capacity to make their own decisions. This will bring its own challenges in relation to some people where there may be a genuine concern about their capacity to arrive at a personal determination without being subject too unhelpful influence by others with competing vested interests.

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Unfortunately, only a very small percentage of people living with ‘a severe and permanent’ intellectual disability could be included in such an assumption. Eventually Supported Decision Making must pass from elderly family carers to an appointed decision maker, be it a provider or government agency. This transfer of care support will always be the greatest practical and emotional hurdle in most individual cases and embodied in the perennial cry ‘who will care for him/her when I am gone’.

p8/2nd Reflecting on the English experience, the use of the word entitlement seems critically important because it helps redress the imbalance of power between people and professionals in traditional funding systems. When a system fails to clarify entitlements and processes then it does not empower citizens. Instead it pulls citizens into a dependency relationship and requires professionals to take on increasing levels of unnecessary and wasteful work ‘on behalf of the citizen’

This addresses the very nub of the ‘cruel lottery’ existing in the current disability funding system (paragraph 4 reference A). The word ‘entitlement’ is emphasised because it appears no fewer than 16 times in this report. p10/1st,2nd Although some people will need support of representation for managing their budget it remains critical to any decent system of individualised funding that the funding is treated as a personal entitlement. Without this element any system of individualised funding risks frustrating basic human rights.

However, the use of the word entitlement is not intended to convey a culture of handouts where a measured degree of disability automatically translates to a specific amount of funds. [ ] The idea of the scheme is that eligible people are entitled to reasonable and necessary assistance to advance their life chances and have control over the resource.

‘Reasonable and necessary assistance’ will always be open to subjective judgements versus common and agreed assessment criteria, accepting that no one measurable solution fits all. Government must now reverse the current philosophy of making the outcome fit the dollar if entitlements are to be met in the planned NDIS timescale. Again, it should not be necessary to reinvent the wheel when establishing entitlement criteria. Well proven measurement tools exist to establish various levels of ability, especially in the areas of mental and intellectual disability.

P12/4.2.3

1. Self help and user-controlled supports – groups are emerging who can provide mutual support at a lower cost and higher quality than professional services. Many people are providing each other with support and advice.

This supports a growing perception that the management structure of some service providers is top heavy and disproportionate to the support provided at the coal face. Perhaps it is time to ask ‘exactly what shape is my provider?’ rather ‘what shape is my provider in!’

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p13/4.2.4 Poor practice in England.

The initial developments in England tended to be very positive, partly because the early motivation of citizens and professionals was focused on advancing people’s life chances and improving practice. There is increasing evidence that this early wave of reform has not spread to other areas and is not always being sustained when the local leadership changes. There seems to be risk of increased professionalization and inefficiency. The lack of a legal framework to support the reforms (unlike the NDIS) ow appears to be a critical weakness. In particular some local authorities:

• Fail to tell people what they are entitled to and then end up having to plan ‘for people’ (‘people’ generic rather than each unique individual case)
• Interfere inappropriately with people’s plans, sending plans to panels and refusing without good reason to agree to plans
• Restrict how people can use their own money (which is what an individual budget should be), creating insecurity about the funding and the rules associated with it
• Limit the range of options available for people to manage their budget, get help to plan or get support
• Confuse genuine personal outcomes with provisional objectives defined in plans The impact of these mistakes is to undermine the ethical basis of the reforms and to leave people in the same disempowered, dependent and damaged relationships that existed previously.

Long gone is the previously safe assumption that ‘professional’ equates to ‘efficient’. On the positive side, the NDIS will be enshrined in law provided it successfully passes through the Senate.

p18.5.3 Resource Allocation Systems(RAS)

The development of a RAS in England, and its future fate, remains one of the most fraught and disputed elements of the whole system. There are now a number of competing consultancy and information technology companies competing to provide ‘the ideal’ RAS. (2012) In addition, that the UK economy is now in severe economic crisis and central government has targeted local government for cuts (31 per cent by 2015) means these systems are now coming under severe pressure and some seem to be becoming subject to manipulation and challenge

Such a company proposal has already surfaced in Australia

p18.5.3 .3. Good systems can be very simple

A system does not need to be complex, and it can use a mixture of explicit rules and human judgement.

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p19.4. Complexity is often used to take back control

Unfortunately there seems to have been an acceleration of complexity in many local areas, fed by a combination of budgetary anxiety, mistrust of local people – but most importantly a loss of trust in the professional staff themselves. Tellingly, much of the drive towards complexity seems to be rooted in a managerial anxiety that staff will undermine it. Unfortunately this mistrust tends to provoke the very thing it fears – for professionals then seek to ‘game’ the system on behalf of their ‘clients’

p19.5. Loss of common-sense

A further problem in England has been a complete loss of common-sense when it comes to implementing the system.

p20.5.4.Lesson 5 – Set clear and public rules that are easy to understand

If people don’t know how the system works and what in normative and reasonable then you can guarantee cynicism, dispute and increased reliance on the judicial and political systems. NDID is happening because Australians demanded a stronger system that gives the assurance of support to people who need it – this will be undermined by obscure or unduly complex systems

Strict application of the KISS principle - Keep It Simple Stupid (or Sir – depending on the addressee) this is less costly and can be transparent to all. Also, NDIS offers an excellent opportunity to, once and for all, divest ourselves of bureaucratic gobbely gook language which necessitates the issuance of ‘plain English’ versions of many government dictums.

p22/1st Planning tools can be useful, for any of us, but the authors of these tools are very clear they should not be used for standardised planning. In fact it seems highly likely that person-centred planning has been unduly commodified(commercialised)

and over-sold.

p22.6.2 The English experience – ‘Support Plans’

The term Support Plan, which has become very prevalent in the UK, was invented to overcome a problem in the UK social care system – that no package of support could be approved unless there was a ‘care plan’ for it which must be written by the social worker

A similar situation is current in Queensland – a Department of Communities prerequisite is that such a plan be evolved with the assistance of certain contracted non government organisations before application for support will be entertained.

p23.6.3 Living without brokers

Another area where the English experience is interesting, by international standards, is that the model of self-directed support, as originally developed, made no role for any specialist planner, organisers of coordinators – professionals who sometimes go by the name broker.

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This was not an accident. Duffy had led one of the early brokerage projects in England and had researched the USA’s systems which were then making heavy use of brokerage. His enthusiasm for these systems waned in the light of certain facts:

• The ongoing lack of empirical evidence to support it as a mandatory part of the model
• The tendency for such systems to undermine faith in individual and family competence and to increase dependency on professionals
• The tendency for such systems to add further professional complexity to an already over-filled field. Of course some system of underpinning and support if essential – but this needs to be plural. There is no evidence to suggest one system is best and common-sense dictates that enforcing one solution for everyone will lead to wasteful monopolies, complacency and a failure to innovate. Brokers, of whatever ilk, are invariably expensive middlemen – TIDSA’s public liability insurance broker pockets 20 per cent of the annual premium.

p24.6.4 Learning for Australia

The gravest danger for Australia would be to repeat the well meaning mistakes of colleagues in the USA. The desire to help people to do more, to live better lives or to get connected is admirable – but when you try to make these things happen through bureaucratic systems you often end up making poor assumptions about what really helps, consequently limiting future opportunities for innovation and creativity.

The three central lessons of the English experience are: Lesson 8 – Do not put undue focus on the plan Plans are, at best, just one possible piece of evidence of competence and should not be made a central requirement of the NDIS. Lesson 9 – Do not let any group dominate the process Systems of helping, planning and support are systems that should be subject to this ongoing social innovation – central specification is not required. Lesson 10 – If in doubt, focus on peer support The most reliable, valued and sustainable form of support comes from people living with disability and families helping each other –do whatever you can to support and stimulate this without commodifying (commercialising) it or turning it into another professional intervention.

Conclusion 4. It was never TIDSA’s intention to add to or detract from what is, in our opinion, an excellent and most timely study of the NDIS in Australia. Rather our input is based on many decades of caring for family members living with various and multiple disabilities and experience with government departments. For us all, the NDIS is, finally, a light at the end of a very long and dark tunnel.

5.   I commend this input to the Senators deliberations.
   

A.J. Lanigan President, TIDSA Inc.