Design Must Follow Function
Submission # 4
to the Productivity Commission’s enquiry into Disability Care and Support
By John Homan,
speaking for the Capricorn Community Development Association, Rockhampton

0.0	Executive Summary
The Productivity Commission in its draft report has given much detail,but not ‘The end in mind’. This brings uncertainty and anxiety to the sector.
This submission, based on research, literature, and experience, defines an end in mind that has relationships and trust as its core values: 
“The NDIA’s objective is to make a positive contribution to the lives of people with disabilities and families so they may build and pursue their goals and dreams for a good life, that is meaningful, inclusive and empowered”.
It then addresses the fears in the sector of the NDIA being structured as a major (Canberra) bureaucracy. The most likely system would be hierarchal, a transactual system that is so common, particularly in government, that few people are aware of alternatives.
Again, based on research, literature, and eperience This submission demonstrates that a Responsible Autonomy system, as it is based on trust and relationships is totally compatible and supportive of the ‘end in mind’. It also:
0.1	Gives superior outcomes,
0.2	Through decentralisation brings decisions close to the consumer, 
0.3	Increasing the speed of communication and decision making significantly,
0.4	Is as accountable as a hierarchal system, and
0.5	Reduces risk,
0.6	Achieves this through a much flatter organisational structure, and
0.7	At a significantly lower cost,
0.8	Improves motivation of staff,
0.9	Through knowledge sharing buids intellectual capital in the organisation.
A hierarchal system is not only more cumbersome and expensive, but can deliver on only a few of the above items.
For all these reasons this submission recommends the adoption of a Responsible Autonomy system for the NDIS/NDIA, even if it causes some discomfort at first.
Recommendations 
1.	That the Productivity Commission give serious consideration to recommending a Responsible Autonomy type NDIA structure,
2.	That the system be highly de-centralised to bring decision making closer to the people with disabilities, and keep employee numbers below 150 in branches,
3.	That service providers be given incentives through training, mentoring and financially to also adopt a Responsible Autonomy based structure.

1.0      Care and Support; what does it mean?
“Design must follow function” Hence design work can not begin until the “end in mind” has been defined. The Productivity Commission’s Draft Report promotes a number of highly desirable reforms to the current system, but does not articulate what the new system really aims to achieve. Until that is clear, it is not possible to design the systems and structures that will enable the ‘end in mind’.
As the enquiry has “Care” and “Support” in its title, it may be assumed that they are core objectives. However, what does it mean? The Draft Report mentions some aspects, but does not identify the core principles and objectives.
2.0       Care and Support
Charles Leadbetter observes that:
“To care for someone means being attentive and responsive to their needs and treating them with respect and dignity even when they are vulnerable. Care depends on the relationship between the person being cared for and the carer.” 
“Care is not just a transaction for personal services. It depends on a relationship of trust between carer and cared for. The contracted-out care services market often fails to deliver such relationships”.
People with disabilities need more than basic care. They also need support towards achieving a good  life, a life with meaning and purpose. Many impediments stand in the way, and people with disabilities are generally poorly equipped to deal with them effectively. Community attitudes, like disrespect, prejudice, discrimination, and social exclusion, all devalue the person, and have a negative effect on self esteem, confidence, capacity and hope. Add to this the effects of a person’s disability, and the need for support to achieve a decent life - different from what money can buy - becomes obvious. 
The old paradigm of case management, is based on the managerial medical model of disability, and is deficit based. Contemporary practice is to build on a person’s strengths. To develop the person’s capacity and skills through mentoring and teaching, so he becomes competent and confident to deal with his own issues. This requires acceptance of someone with disability as of inherent equal human worth which only come about through knowing a person in day-to-day relationships.
As Eddie Bartnik and Ron Chalmers say, It’s about more than the money, to the extend that direct funding is viewed as an adjunct to family and community based supports rather than as the primary solution to meeting needs. 
The consistent theme anecdotally, empirically, from research and literature is that relationships are the key to people achieving a meaningful and inclusive life. Relationships that are based on trust, respect,  inclusion, community, and capacity building. 
“A full life comes from having a number of significant and fulfilling relationships that support you and give your life purpose, someone to share experiences with, good and bad”.
“Care is not just a transaction for personal services. It depends on a relationship of trust between carer and cared for”.
“It would appear that the influence of a contemporary service delivery framework, such as Local Area Coordination has the capacity to facilitate the empowerment of all parents and carers regardless of their support needs”.
“The evolving story of Amanda provides empirical evidence of what can be achieved when community engagement and effective relationships become part of the life of an intellectually disabled person”.  
“Surely these young adults have the right to engage in human relationships and derive the same benefits we have all received from being able to share in an intimate and loving relationship”.
3.0	      Relationships
Relationships are the organic infrastructures that support family, friend, community and inclusion. It is the infrastructure that also links us with the natural world around us. It is flexible and innovative, neither good nor bad. The importance of relationships is well understood. In a 2001 survey in West Australia “people with disabilities and their families throughout the state have expressed their view that a good life in the local community requires opportunities for valued relationships, security for the future, choices, contribution and challenge”.
“The factor recognised as being the prime contributor to life satisfaction for the disabled is their ability to form quality relationships and therefore is no different to the experience of the general population. However perhaps because of their inherent dependence on others for basic care, many of those with disabilities recognise the real interdependence we all have on each other. By the deliberate creation of shared and committed relationships people are able to rise above the downside and problems of dependence and find real pleasure and enjoyment in life.” 
The following story serves as a reminder that paradigms about the capacity of others to draw satisfaction and comfort from relationships should be continuously challenged.
“Dowrick (2000, p.436) It is the story of a profoundly intellectually and physically disabled person and his relationship with a volunteer carer who visits daily. Although deaf, blind, non-verbal and severely limited in movement, the disabled person indicates by his behaviour, (smiling, moving and noises) his awareness and pleasure as soon as his visitor enters his residence, even though he may be many rooms away. She notes that although ‘Geoff’ is some-one who appears to have minimal powers of comprehension, his ability to sense his visitor’s presence and to draw consolation and pleasure from it is acutely evident.”
To build a culture that ensures a meaningful and fulfilling life for Amanda is a major challenge! It has to be a living culture that develops and grows. It has to have the critical mass that will help maintain its integrity, accommodate change, but resist degradation. To achieve this many people need to be part of Amanda’s life. People with common values and a common focus, but with many diverse opinions, ideas, and interests.
4.0	      “Function”
What then will be the function, the objective, the purpose of the NDIS/NDIA? When Charles Leadbetter states that:
“At the core of a good society, a fulfilling life and an effective state are relationships among people, between citizens, with public services that provide care, recognition, purpose and motivation”. 
he may well point to an answer:
“The NDIA’s objective is to make a positive contribution to the lives of people with disabilities and families so they may build and pursue their goals and dreams for a good life, that is meaningful, inclusive and empowered”.
Everybody in the organisation should have this statement displayed on their desk so they  can test every decision they are about to make, has a positive, negative or neutral impact on this shared vision. 
5.0       “Design”
‘Design must follow function’ There is ample evidence that co-productions based on respectful and trusting relationships give superior outcomes. A better life for people with disabilities, and a better, more sustainable use of resources.
It follows that designing the NDIA system should start at the interface with people with disabilities and community, and that relationships, respect, and trust must be the core values that underpin its organisational culture, by design.
“Without exception the dominance and coherence of culture proved to be an essential quality of the excellent companies. Moreover the stronger the culture and the more it was directed toward the marketplace, the less need was there for policy manuals, organization charts, or detailed procedures or rules. In these companies, people way down the line know what they are supposed to do in most situations because the handful of guiding values is crystal clear.
5.1       The interface
The Coordinator is the interface between the NDIA and the person with a disability, and their relationship is critical. The quality of their communication, will determine whether they can develop a long term respectful and trusting relationship. As a minimum they must embrace common values and speak a common language. Equality, mutual respect and credibility are the ingredients that make a trusting relationship possible. A relationship that is facilitative, not controlling; co-operative, not confrontational. Without this meaningful communication is not possible. To grow empathy and respect the NDIA needs to have – by design - as broad an interface with community as is possible. 
Communication is not just about the spoken word. Body language, emphasis, passion, tone of voice all contribute, many of them abstract and open to interpretation. The written report only records a small part of this, and the more layers of administration it has to pass through, the less it will reflect the real, on the ground, situation. A vertical Chinese whispers.
5.2	      The Coordinator
Coordinators are the most important people in the NDIA system. Eddie Bartnik and Ron Chalmers observe that: the system is only as good as the individual (Local Area) Coordinator that the person has, hence  staff selection, quality and consistency is critical. 
Again the theme is about relationships:
“promoting relationships, within families, wider social networks, peer groups and neighbourhoods, should be central to politics, public policy and public services” 
“develop partnerships with individuals and families as they build and pursue their goals and dreams for a good life, and with local communities to strengthen their capacity to include people with disabilities as valued citizens”.  
“In order to obtain accurate outcomes from an assessment there needs to be a process to enable the development of trust and open communication between the assessor and the client, especially with people who have complex needs and/or multiple disadvantage”.
The Coordinator’s task is complex and challenging. Bartnik and Chalmers observe that:
“It contains elements of individual coordination, personal advocacy, family support, community development and direct funding’ and that ‘the unique quality, and much of the advantage, of Local Area Coordination derives from the mixing and blending of activities and approaches of each of these human service orientations as well as the intentional design of an ongoing personal relationship”.
5.3	      What does a Coordinator have to bring to the table?
Obviously there is not a single discipline that encompasses and connects all  the parts the Coordinator plays, as outlined in the previous paragraph. Hence formal qualifications are only of limited relevance when selecting a Coordinator. However they will need to be highly trained and skilled, experienced in working with people, and understand that trusting and credible relationships majorly contribute to good outcomes. 
Some essential qualities, largely abstract, and non-negotiable are:
•	A values base grounded in respectful relationships, equality, and social justice, 
•	Emotional intelligence,
•	A positive and contemporary attitude towards people with a disability,
•	Understanding of and commitment to the end in mind: a quality life for people with disabilities, and
•	the ability and willingness to develop and maintain positive and trusting relationships with people with disabilities and their families.
These are qualities that need to be present, and can be further grown and developed in an organic environment of empowerment, however can not be created from a zero base.
Also desirable are skills in the areas of,
•	individual needs analysis,
•	personal advocacy,
•	individualised funding,
•	planning - for individuals and families, and
•	community development.
And lastly:
•	effective organisation of time and resources,
•	effective administration and financial management skills, and
•	understanding of, and compliance with, administrative procedures and standards.
•	a preference for Coordinators to be part of the community they will work in.
5.4     What do Coordinator do?
•	Build and grow credible and trusting relationships with individuals, families and their communities.
•	Be the co-driver in their journey to an inclusive and meaningful life. Be the person holding the map, while assisting and supporting the clients to move forward themselves. The barriers, road blocks, potholes etc. that are constantly in the way are therefore potentially smoothed by this partnership, thus enabling the journey to be taken by others as well.
•	Promote self advocacy. Provide advocacy support and access to independent advocacy when required. 
•	In partnership with the service users identify support needs and draw up a defendable direct funding proposal
•	Allocate resources
•	Act as an advisor, broker with service providers
•	Evaluate programme outcomes
      
5.4	What does the NDIA have to provide to enable and support a Coordinator?
•	An empowering environment which maintains, develops and grows a culture of trust, a culture in which Coordinators are valued and trusted. 
•	Strong peer support through:
o	Regular supervision,
o	Retreats,
o	Communities of practice,
o	Formal and informal networks.
•	Authority to match responsibility and make binding decisions,
•	Encouragement to be innovative, and take and manage risks. (however, In the past, service brokerage models have often collapsed under the weight of the bureaucracy that established them to be "flexible" and then denied them that flexibility by demanding structure, process, reporting back, outputs and so on.
•	A maximum limit of  50 or 60 major clients, people and their families/carers in their area they get to know and build relationships with.
5.4.0     Management systems
5.4.1	The hierarchal system 
The hierarchal system is so common that few people are aware that there are alternatives. Government departments, and many organisations and businesses have hierarchal, top down management systems. It is of feudal origin and became dominant in the early 20th century through Frederick Winslow Taylor’s ‘System of Scientific Management’. 
In an hierarchal system all power, knowledge, authority and control is vested at the top. Ideas and commands move up and down from the summit to the units, through vertical “silos”, with little communication between them. 
Knowledge is the employee’s capital and defines his place in the organisation, clearly shown on charts, rank and pay scales. Individuals in these silos aspire up and fear going down, and this further inhibits the sharing of knowledge. Not surprisingly that such an environment creates a culture of suspicion, fear, favouritism, gossip conflict of interest, and dishonesty.
It is clear that trust is at a premium in such organisations, and low trust has a cost, in speed and financially. Low trust slows everything down says Stephen Covey, every communication, and every relationship. Where trust is low systems are introduced to protect the organisation – and also the hierarchy - from unethical, fraudulent, or just plain stupid activities. These extra layers of defensive bureaucracy slow decision making, cost money, but do not contribute to good outcomes.
There is considerable concern in the sector that the NDIA organisation may go into the direction of a large Canberra bureaucracy. UniCare observes that:
“Currently, once an assessment is made, it is sent to the NDIA for checking and the determination of the assessment package.  There is the possibility that this process will be very time consuming, and it is at this point that flexibility and tailoring may be lost”.
There is a role for a hierarchal form of management: emergency services, public transport, police and defence.
In the human services sector a hierarchal system of management represents old, 19th century thinking. Now, in the 21st century, it demonstrates attitudes and issues that are ‘bad’ not current ‘best practice’ and incompatible with the ‘new’ thinking:  
•	With a low level of trust relationships will be of a low order, with little credibility.
•	Control will be centralised, with many layers of bureaucracy impeding accurate communication,
•	This will 
o	Affect the quality of decisions made,
o	Affect the speed with which decisions are made,
o	Add considerably to the cost of running the organisation without contributing to quality or quantity.
•	If hierarchy, such an important aspect of organisation, goes unquestioned, this surely inhibits learning, since to learn requires us to ask questions and to be open to new things.
•	With the top level of the organisation being the only source of new ideas, will have difficulty to broaden or change its focus.
•	Risk aversion causing stagnation, and failure to consider change
•	With a rigid, code ethics based organisational structure, no innovation and flexibility will occur, as they open the door to decisions exposing the organisation to risk
•	As knowledge and expertise are individually owned, and not shared, there is little growth of intellectual capital in the organisation, 
•	A narrow view of the ‘world’ through a lack of networking and knowledge sharing.
Anyone of these issues inhibits the capacity of the organisation meet the support needs of coordinators, as noted in section 5.4.  
5.4.2    Responsible Autonomy 
Responsible Autonomy is an alternative: 
“With responsible autonomy “an individual or a group has autonomy to decide what to do, but is accountable for the outcome of the decision.” “Accountability,” says Mr Fairtlough, “is what makes responsible autonomy different from anarchy””.
Responsible Autonomy is an organic system, built around relationships and trust. Organisation members have a set of compatible, and shared values. This enables a culture to grow, that is empowering, with shared objectives and motives. 
In an Responsible Autonomy power is shared, and many people are involved in decision making. Networking, knowledge sharing and mentoring are encouraged, and build the intellectual capital of the organisation. Daniel Wegener labels the phenomena as “transactive memory,” where people are not just aware of what they know, but also what other people know. Being able to draw on shared knowledge and expertise leads to better outcomes. 
“Within the group dynamic you need to understand all of the relationships between its members in order to function effectively within it. Small groups are essentially a kind of peer pressure: it is knowing people well enough that what they think of you matters”. 
A high level of trust leads to superior outcomes, reduces risk, increases speed, and lowers cost.
5.4.3	Risks in ‘self directed funding’
Financial risks to service users and the NDIA are not significant. The Coordinator as the ‘co-driver holding the map’ in partnership with service users, and with established trusting relationships with service providers and the community, are expected to remain that way, only requiring light touch monitoring. 
“Where consumers were managing their own decisions and managing some of the relationships with services directly, costs were often unexpectedly reduced. I am not talking massive savings but, as I said, enough in each region sometimes to get an extra person some assistance, which in this area they are important”.
The Demos ‘Making it personal’ study has concluded that risks are no greater than in traditional systems and mostly less, and makes the following observations relating to risk:
•	People with personal budgets do not take undue risks; often the care packages they design are lower risk than traditional services; there is more risk sharing between people and professionals; checks and balances can be designed into the system to eliminate undue risks. 
•	With the shift in power towards users and away from professionals come responsibilities for users like assessing and managing risks and to account for how resources are used. Users generally welcome these responsibilities.
•	Another common worry is that people will use their personal budgets to commission inappropriate services. Cases where people spend their money rashly or unwisely are extremely rare. Studies of patients involved in decision-making over budgets for long-term health needs, for example, found they make far fewer unreasonable or irrational demands than clinicians fear; one study showed that patients often prefer more conservative and cheaper treatment than the doctors recommend.
•	As yet there is no evidence fraud is a serious problem with personal budgets in social care. People are determined to get the most out of their money to improve their quality of life. Family members generally work hard to get the best deal for their family. 
In the same paper the observation was made that:
“Local authorities (the funding providers in the British system) can minimise the risks of fraud by putting in place light-touch monitoring and auditing systems to check that a service user’s needs are genuine and that their support plan is meeting those needs”.
5.4.3    Size does matter
Responsible Autonomy works well in smaller groups, however there is a limit at which social cohesion, relationships and trust become fragmented. Gladwell observes that:
“Groups of less than 150 members usually display a level of intimacy, interdependency, and efficiency that begins to dissipate markedly as soon as the group’s size increases over 150”. 
The NDIA will far exceed the magic 150 number, however by deliberately decentralising, can create a system that takes full advantage of Responsible Autonomy, and  stay within Gladwell’s magic number of 150 as well. This concept has been exploited by a number of corporations that use it as the foundation of their organizational structures.
“Gore Associates, a privately held multimillion-dollar company responsible for creating Gore-Tex fabric and all sorts of other high tech computer cables, filter bags, semiconductors, pharmaceutical, and medical products. What is unique about this company is that each company plant is no larger than 150. When constructing a plant, they put 150 spaces in the parking lot, and when people start parking on the grass, they know it's time for another plant. Each plant works as a group. There are no bosses. No titles. Salaries are determined collectively. No organization charts, no budgets, no elaborate strategic plans. Employees within a plant have strong relationships with everyone else in the plant, across disciplines.  Wilbert Gore - the late founder of the company, found through trial and error that 150 employees per plant was most ideal. "We found again and again that things get clumsy at a hundred and fifty," he told an interviewer some years ago”. 
Where Gore’s plants were built only some 20 miles apart, a great advantage for NDIA is that it can bring the organisation close to its customers. Delays and misinformation in decision making may largely be reduced if not avoided through a decentralised – close to the customer system. Again, more trust equals more speed, equals less cost. With high level communication it also addresses Leadbetter’s concern of services hitting targets, but missing the point.
Ten years ago Anna Bligh, now Premier of Queensland, then the Minister responsible for disability services said:
 “What we have done is bring the decision making much closer to the client and devolved, to the extent that it is possible, decision making about the allocation of funds and delegated that much, much closer to the families that we are talking about. It is not my decision to approve (the washing machine). It is the decision of the people who are the closest at the ground level”.
6.0       The people
Changing the culture in an organisation is possible but will take a lot of blood, sweat and tears, and commitment and patience, and is still a risky business. 
“It is not often we get the chance to begin anew with a blank sheet of paper on the drawing board, and a chance to get it right the first time”.
The most critical is the people, they are the organisation. In a hierarchal organisation staff are usually hired on the basis of their knowledge and skill. In an Responsible Autonomy there are two criteria: value base as well as knowledge and skill. The first one is the most important, but the more difficult to assess. Attitude is an abstract and a CV or ‘tick and flick’ will tell us little. However as Eddie Bartnik and Ron Chalmers observed: 
“The system is only as good as the individual (Local Area) Coordinator that the person has, hence  staff selection, quality and consistency is critical”.
7.0       Leadership
	The advent of a National Disability Insurance Scheme has created excitement and anticipation in the sector, but also concern and nervousness. There is considerable soul searching and discussion within NGO’s and the sector at large. Dealing with a large hierarchal bureaucracy – mentioned before – is one concern.
“The NDIS for many is about unchosen change, and that includes key players in the sector. Government leading through strong legislation will ensure quicker acceptance, and hopefully understanding, and shortened time lines for implementation”.
A Responsible Autonomy type NDIA structure will not ony remove anxiety in the sector, but will generate beter outcomes, and will encourage organisations to also change to this system, as it is more compatible with meeting clients’ needs, but also will simplify communication and accountability with the NDIA.
8.0       Recommendations 
4.	That the Productivity Commission give serious consideration to recommending a Responsible Autonomy type NDIA structure,
5.	That the system be highly de-centralised to bring decision making closer to the people with disabilities, and keep employee numbers below 150 in branches,
6.	That service providers be given incentives through training, mentoring and financially to also adopt a Responsible Autonomy based structure.

References

Bartnik, E., Chalmers, R., It’s about more than the money, Local Area Coordination Supporting People with Disabilities, ‘Co-Production and Personalisation in Social Care’, Jessica Kingsley Publishers, ISBN 978 1 84310 558 9, 2007	
Bligh, A., The Quiet Revolution, 2001, Address to the Brisbane Institute, 08-08-2000	
Buchanan, A., The Predictors Of Empowerment For Parents And Carers Of People With Intellectual Disabilities Within The Direct Consumer Funding Model, 2007,	
Coutler, A., The anonymous patient: Ending paternalism in health care, London, the Nuffield Trust, 2002, cited Leadbetter, C., Making it personal, Demos, 2008	
Covey, S. M. R, The Speed of Trust, 2006, Simon & Schuster, ISBN 10:0-7432-9560-9	
Fairtloug, G., The Three Ways of Getting Things Done, 2005, Triarchy Press, ISBN, ISBN 0-9550081-0-7	
From Charity to Freedom, PC submission 599, 2010	
Gladwell, M., The tipping point, 2000, Little Brown, ISBN 0316346624Fairtloug, G., quoted in Hierarchy is not the only way, The Economist, 091205	
Homan, J., letter to the Hon Anna Bligh, at the time Disability Services Queensland (DSQ) was still referred to as the ‘new agency’, 100998	
Leadbetter, C., et al, Making it Personal, Demos,2008	
Leadbetter, C., With - Relationships and The Public Good, 2008	
Leipoldt, E., Submission DR 892	
Miller, D., quoted, Leadbeater, C., With - Relationships and The Public Good, 2008,	
Paton, S., Homan, J., Learning with Amanda, 2005	
Peters, T. J., Waterman Jr, R. H., In search of excellence, 1984,  P5, Harper & Rowe, Publishers,ISBN 0-06-015042-4	
Shut Out, National People with Disabilities and Carer Council, 2009	
Stehlik, D., Chenoweth, L., Flexible funding as an underpinning to community resilience, 2001	
Uniting Care Network Response to the Productivity Commission Draft Report into Long Term Disability  Care and Support, June 2011