Self-Directed Support

Dr Simon Duffy ￭ The Centre for Welfare Reform ￭ 27th August 2013 ￭ New Zealand Ministry of

Health, Auckland

Lessons from the international experience

always improves outcomesalways increases demandsometimes reduces costssystem design is critical

40 plus years of self-directed support

Self-directed support has developed slowly over 40 years and has faced significant systemic resistance. It has however led to major change in many countries and continues to spread.

You can picture this change as being a shift from support being a professional defined gift to it becoming a citizen controlled entitlement.

At its heart is a shift in power from systems towards citizens. However such power is not a simple commodity and transformative change is often corrupted into merely transactional change.

Social innovations often fail to overcome the natural forces of resistance that protect existing systems.

Although there is strong evidence that self-directed support improves outcomes and can increase efficiency there is less careful analysis of the factors that actually help or hinder. Arguably, some advocates may even focus on the wrong factors.

Brokerage fallacy - sometimes people get great help from independent advisors, but most people can do things themselves or get assistance from community or professionals

Planning fallacy - planning can help people be creative, but too much focus on planning is damaging to the person’s authority. Its more helpful to simply link people up and encourage the sharing of experiences and good ideas.

Employer fallacy - some people do value being an employer, but its not what everyone wants and its not essential to improve outcomes

Purist fallacy - disabled people can make their own decisions, but often family, friends, professionals or others can be competent decision-makers.

Blank-sheet of paper fallacy - sometimes you must simply design support and then cost it - but this is rarely good practice and will often lead to more professionalised, expensive and unimaginative solutions

Common fallacies include:

My own hypothesis is that an effective system of self-directed support is one that best enables citizens to make best use of limited resources to achieve their own goals and become more effective citizens.

1 Rights - robust rights that give people effective entitlements

2 Control - person, or someone close to them, controls budget

3 Clarity - systems, rules and budgets are clear

4 Flexibility - budgets can be used in many different ways

5 Ease of Use - it is easy to plan, manage and control assistance

6 Community - person’s contribution to society grows

7 Sustainable - system is affordable, innovative and supported

These would seem to be some of the qualities of an effective system of self-directed support.

1. RightsA clear entitlement both respects the citizen and also provides the foundation for confident planning and personal freedom. Gifts create dependencies and usually foster more conservative decision-making.

“It’s my life, my human rights”

2. ControlGetting the right point of control for the individual is critical to high quality decision-making. Decisions made at too great a distance from the individual are unlikely to be effective.

3. ClarityKnowing your budget, knowing the rules, promotes creativity and personal responsibility. When you don’t know your own budget then you must trust others to make key decisions.

The old system - services first

The new system - people first

4. FlexibilityFlexible resources can be put to the most effective use. Inflexibility locks people into the older patterns of provision and undermines personal authority.

5. Ease of useWhere a system is easy to use then there is no need to become unduly dependent on others to make key decisions. Complexity reinforces professional control and wasteful infrastructure.

6. CommunityThe support that people need to be full citizens is located in their community and an effective system encourages greater peer and community engagement. Isolation from community limits citizenship and creativity.

We haven’t begun to tap the power of peer support

7. SustainableA good system is affordable, develops organically over time and increased its social and political legitimacy over time. Hurried systemic change often unravels or becomes corrupted.

Positive change can happen at any levels, but requires the creation of opportunities for innovation

Innovation is complex, evolving and requires different strategies at different stages.

The biggest risk for any system is poor cost control - the second biggest risk is the effort to centrally manage decisions by people or other local agents. The key is to design cost control and decentralisation in together.

Citizenship is the goalThe best test is to go back to the purpose of the innovation and test yourself by that. Is it helping people acheive greater citizenship? Is it consistent with the dignity of citizenship?

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